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#128 From: SD <sdunkley9b@...>
Date: Wed Nov 25, 2009 12:31 am
Subject: Re: dealing with anger 		sdunkley9b
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Thanks Jooan for the kind words. It is very difficult now...but he suffered a lot. The cancer was very aggressive once it started up. He got this 4.5 years ago and it was indolent, but no idea why it became SO aggressive and widespread...;(
 
Regards
Mario

DX Aug 2005 MPNST

--- On Tue, 11/24/09, Elizabeth Joan Nuttall <joannuttall76@...> wrote:

From: Elizabeth Joan Nuttall <joannuttall76@...>
Subject: Re: [Epithelioid_Sarcoma] dealing with anger
To: Epithelioid_Sarcoma@yahoogroups.com
Date: Tuesday, November 24, 2009, 10:30 PM

 
Hi Mario,
I am so sorry for your loss.   Goodness,  how tough for you all.    I'm sure you are correct in saying that it is probably his way of dealing with what he is dealing with.   He had so many plans and things he wanted to do,  which ofcourse will be on hold for a long while it seems.
I thank you sincerely for your input,  I'm so glad to have the group so that I can ask questions to folk who are experiencing the same or similar situations.
Do you have a good support system Mario?   Look after yourself,  do something you enjoy too.   One is inclined to get so caught up in this nasty disease and forget to look after ourselves too.
Please pop into the group when you feel you would like some comfort.
Take care then,
Joan
On Tue, Nov 24, 2009 at 3:13 AM, SD <sdunkley9b@yahoo. com> wrote:
 
Hello Joan 
 
I am sorry to hear about the progression. Yes indeed, I think that is normal for your son to be angry (and I am very depressed) about what is happening.
 
It might be his way of dealing with the condition he is in. Its very distressing I am sure.
 
My partner whose email this is passed away two weeks ago from ES of the thigh after 4.5 years of struggle. It is very rough on everyone.
 
Regards
Mario

--- On Mon, 11/23/09, vagnbietjie <joannuttall76@ gmail.com> wrote:

From: vagnbietjie <joannuttall76@ gmail.com>
Subject: [Epithelioid_ Sarcoma] dealing with anger
To: Epithelioid_ Sarcoma@yahoogro ups.com
Date: Monday, November 23, 2009, 6:00 PM


 
Hi,
I know it's normal to be angry with a diagnosis of E.S., but is it normal to take it out on the family member's that are there to help you?
Rich is very scared I know. He has just got the results of his CT scan after his radiation, his tumor has grown and surgery is only scheduled for the 21st January (that would be 12 weeks, instead of the 4-6 weeks healing period post radiation.) I asked him if I could make a suggestion, he said "yes, I can see you are are trying to say some thing." So I suggested he phone the surgeons office an d ask if the delay in surgery would be wise seeing that the tumor had grown so after 6 weeks. He didn't answer at all.
In the end I came back home as my son wasn't even speaking to me, and when I spoke to him he would answer in such an angry way. I asked him if he realized how short he was with me. There were other things which were so difficult too. He denied it, but was totally different to every one else.
Rich is off his dilaudid now and able to drive himself around. Infact he was staying away from his apartment all day, hence my decision to come home sooner than anticipated.
If any one has experienced this, could you let me know how to deal with it without taking it personally, which I have.
Thanks,
Take care,
Joan





Reply | Forward | Messages in this Topic (8)
#127 From: Kana Yang <kana.yang@...>
Date: Wed Nov 25, 2009 12:00 am
Subject: Re: dealing with anger 		kana.yang
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Dearest Mario,
 
I am so sorry to hear about your loss! I can't imagine what you, your family and friends must be going through at the moment. I hope that you will find be able to find peace in knowing that your partner is no longer suffering from this terrible disease. Thank you for being apart of our group and sharing with us your thoughts. I will keep you in my thoughts and prayers. Take care of yourself!
 
Love,
Kana

From: SD <sdunkley9b@...>
To: Epithelioid_Sarcoma@yahoogroups.com
Sent: Tue, November 24, 2009 2:13:41 AM
Subject: Re: [Epithelioid_Sarcoma] dealing with anger

 

Hello Joan
 
I am sorry to hear about the progression. Yes indeed, I think that is normal for your son to be angry (and I am very depressed) about what is happening.
 
It might be his way of dealing with the condition he is in. Its very distressing I am sure.
 
My partner whose email this is passed away two weeks ago from ES of the thigh after 4.5 years of struggle. It is very rough on everyone.
 
Regards
Mario

--- On Mon, 11/23/09, vagnbietjie <joannuttall76@ gmail.com> wrote:

From: vagnbietjie <joannuttall76@ gmail.com>
Subject: [Epithelioid_ Sarcoma] dealing with anger
To: Epithelioid_ Sarcoma@yahoogro ups.com
Date: Monday, November 23, 2009, 6:00 PM

 
Hi,
I know it's normal to be angry with a diagnosis of E.S., but is it normal to take it out on the family member's that are there to help you?
Rich is very scared I know. He has just got the results of his CT scan after his radiation, his tumor has grown and surgery is only scheduled for the 21st January (that would be 12 weeks, instead of the 4-6 weeks healing period post radiation.) I asked him if I could make a suggestion, he said "yes, I can see you are are trying to say some thing." So I suggested he phone the surgeons office an d ask if the delay in surgery would be wise seeing that the tumor had grown so after 6 weeks. He didn't answer at all.
In the end I came back home as my son wasn't even speaking to me, and when I spoke to him he would answer in such an angry way. I asked him if he realized how short he was with me. There were other things which were so difficult too. He denied it, but was totally different to every one else.
Rich is off his dilaudid now and able to drive himself around. Infact he was staying away from his apartment all day, hence my decision to come home sooner than anticipated.
If any one has experienced this, could you let me know how to deal with it without taking it personally, which I have.
Thanks,
Take care,
Joan




Reply | Forward | Messages in this Topic (8)
#126 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Tue Nov 24, 2009 10:30 pm
Subject: Re: dealing with anger 		vagnbietjie
Offline Offline
Send Email Send Email
 
Hi Mario,
I am so sorry for your loss.   Goodness,  how tough for you all.    I'm sure you are correct in saying that it is probably his way of dealing with what he is dealing with.   He had so many plans and things he wanted to do,  which ofcourse will be on hold for a long while it seems.
I thank you sincerely for your input,  I'm so glad to have the group so that I can ask questions to folk who are experiencing the same or similar situations.
Do you have a good support system Mario?   Look after yourself,  do something you enjoy too.   One is inclined to get so caught up in this nasty disease and forget to look after ourselves too.
Please pop into the group when you feel you would like some comfort.
Take care then,
Joan
On Tue, Nov 24, 2009 at 3:13 AM, SD <sdunkley9b@...> wrote:
 

Hello Joan 
 
I am sorry to hear about the progression. Yes indeed, I think that is normal for your son to be angry (and I am very depressed) about what is happening.
 
It might be his way of dealing with the condition he is in. Its very distressing I am sure.
 
My partner whose email this is passed away two weeks ago from ES of the thigh after 4.5 years of struggle. It is very rough on everyone.
 
Regards
Mario

--- On Mon, 11/23/09, vagnbietjie <joannuttall76@...> wrote:

From: vagnbietjie <joannuttall76@...>
Subject: [Epithelioid_Sarcoma] dealing with anger
To: Epithelioid_Sarcoma@yahoogroups.com
Date: Monday, November 23, 2009, 6:00 PM


 
Hi,
I know it's normal to be angry with a diagnosis of E.S., but is it normal to take it out on the family member's that are there to help you?
Rich is very scared I know. He has just got the results of his CT scan after his radiation, his tumor has grown and surgery is only scheduled for the 21st January (that would be 12 weeks, instead of the 4-6 weeks healing period post radiation.) I asked him if I could make a suggestion, he said "yes, I can see you are are trying to say some thing." So I suggested he phone the surgeons office an d ask if the delay in surgery would be wise seeing that the tumor had grown so after 6 weeks. He didn't answer at all.
In the end I came back home as my son wasn't even speaking to me, and when I spoke to him he would answer in such an angry way. I asked him if he realized how short he was with me. There were other things which were so difficult too. He denied it, but was totally different to every one else.
Rich is off his dilaudid now and able to drive himself around. Infact he was staying away from his apartment all day, hence my decision to come home sooner than anticipated.
If any one has experienced this, could you let me know how to deal with it without taking it personally, which I have.
Thanks,
Take care,
Joan




Reply | Forward | Messages in this Topic (8)
#125 From: SD <sdunkley9b@...>
Date: Tue Nov 24, 2009 10:13 am
Subject: Re: dealing with anger 		sdunkley9b
Offline Offline
Send Email Send Email
 
Hello Joan
 
I am sorry to hear about the progression. Yes indeed, I think that is normal for your son to be angry (and I am very depressed) about what is happening.
 
It might be his way of dealing with the condition he is in. Its very distressing I am sure.
 
My partner whose email this is passed away two weeks ago from ES of the thigh after 4.5 years of struggle. It is very rough on everyone.
 
Regards
Mario

--- On Mon, 11/23/09, vagnbietjie <joannuttall76@...> wrote:

From: vagnbietjie <joannuttall76@...>
Subject: [Epithelioid_Sarcoma] dealing with anger
To: Epithelioid_Sarcoma@yahoogroups.com
Date: Monday, November 23, 2009, 6:00 PM

 
Hi,
I know it's normal to be angry with a diagnosis of E.S., but is it normal to take it out on the family member's that are there to help you?
Rich is very scared I know. He has just got the results of his CT scan after his radiation, his tumor has grown and surgery is only scheduled for the 21st January (that would be 12 weeks, instead of the 4-6 weeks healing period post radiation.) I asked him if I could make a suggestion, he said "yes, I can see you are are trying to say some thing." So I suggested he phone the surgeons office an d ask if the delay in surgery would be wise seeing that the tumor had grown so after 6 weeks. He didn't answer at all.
In the end I came back home as my son wasn't even speaking to me, and when I spoke to him he would answer in such an angry way. I asked him if he realized how short he was with me. There were other things which were so difficult too. He denied it, but was totally different to every one else.
Rich is off his dilaudid now and able to drive himself around. Infact he was staying away from his apartment all day, hence my decision to come home sooner than anticipated.
If any one has experienced this, could you let me know how to deal with it without taking it personally, which I have.
Thanks,
Take care,
Joan



Reply | Forward | Messages in this Topic (8)
#124 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Mon Nov 23, 2009 10:38 pm
Subject: Re: Re: dealing with anger 		vagnbietjie
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Hi Kathy,
Thanks so much for your reply.   Goodness,  Rich still has to go through all of that.   Yes the driving!   He did that with the way I park!   My other son,  Mark,  who has been my right hand,  told me to drop him off at the shopping mall,  or the apartment and then to park the car alone to avoid that.   Poor chap won't even let me into his doctors visits with him.   I know he's an adult,  but I so want the surgeon to know about the recent CT scan result and the 12 week wait post radiation  (when they had originally said 4-6 weeks to heal)   He says that the chemo oncologist who is still against him having chemo after the surgery,  said the tumor may have swollen with the radiation,  have you heard of that?   Why would they do the CT as soon as radiation was done,  especially if they say there will be swelling,  and two months before surgery,   the whole thing doesn't make sense.
You know Kathy,  I'm going to talk to my hubby and see if he feels comfortable with me talking to the surgeon's receptionist in Calgary.  He will I know,  as long as he doesn't have to!!   He finds the whole illness over whelming,  and I am the stronger of us,  good idea,  I hope it goes over O.K. 
Here's hoping one of them will get back to me!
Thanks for you in sight and help and prayers Kathy.   What would I do with out all of you!!
Take care,
Love and light,
Joan
On Mon, Nov 23, 2009 at 12:29 PM, KathyZ <kathy.zuber@...> wrote:
 

Oh, Joan

You poor dear. I know it's hard, but Stephanie did the same kinds of things. I spent an entire month with her in the hospital when they were doing major muscle removal surgeries, skin flaps, skin grafts, etc. She would snap at me often, but she took most of it out on her dad. Every time Dave would say something to her she'd actually yell at him. He was great though. He never argued, just apologized.

She would yell at us if we asked the doctor a question - how embarrassing!!

She would yell at the way my hubby drives (but I yell at him too!)

I really think it's the anger they feel and, I guess, someone has to take the brunt of it!

I'm very sorry to hear about the tumor growth. I too wonder why the delay? Have you ever considered calling the doc yourself? He's already mad at you ;-)

Steph's doctor had a doctor's assistant - I used to call her often.

Did your son want you to leave? Have you spoken with him since? I hope it all smooths over.

I'll say a prayer for you both.

Kathy



--- In Epithelioid_Sarcoma@yahoogroups.com, "vagnbietjie" <joannuttall76@...> wrote:
>
> Hi,
> I know it's normal to be angry with a diagnosis of E.S., but is it normal to take it out on the family member's that are there to help you?
> Rich is very scared I know. He has just got the results of his CT scan after his radiation, his tumor has grown and surgery is only scheduled for the 21st January (that would be 12 weeks, instead of the 4-6 weeks healing period post radiation.) I asked him if I could make a suggestion, he said "yes, I can see you are are trying to say some thing." So I suggested he phone the surgeons office an d ask if the delay in surgery would be wise seeing that the tumor had grown so after 6 weeks. He didn't answer at all.
> In the end I came back home as my son wasn't even speaking to me, and when I spoke to him he would answer in such an angry way. I asked him if he realized how short he was with me. There were other things which were so difficult too. He denied it, but was totally different to every one else.
> Rich is off his dilaudid now and able to drive himself around. Infact he was staying away from his apartment all day, hence my decision to come home sooner than anticipated.
> If any one has experienced this, could you let me know how to deal with it without taking it personally, which I have.
> Thanks,
> Take care,
> Joan
>



Reply | Forward | Messages in this Topic (8)
#123 From: "KathyZ" <kathy.zuber@...>
Date: Mon Nov 23, 2009 7:29 pm
Subject: Re: dealing with anger 		kathy.zuber
Online Now Online Now
Send Email Send Email
  
Oh, Joan

You poor dear.  I know it's hard, but Stephanie did the same kinds of things.  I
spent an entire month with her in the hospital when they were doing major muscle
removal surgeries, skin flaps, skin grafts, etc.  She would snap at me often,
but she took most of it out on her dad.  Every time Dave would say something to
her she'd actually yell at him.  He was great though.  He never argued, just
apologized.

She would yell at us if we asked the doctor a question - how embarrassing!!

She would yell at the way my hubby drives (but I yell at him too!)

I really think it's the anger they feel and, I guess, someone has to take the
brunt of it!

I'm very sorry to hear about the tumor growth.  I too wonder why the delay? 
Have you ever considered calling the doc yourself?  He's already mad at you  ;-)

Steph's doctor had a doctor's assistant - I used to call her often.

Did your son want you to leave?  Have you spoken with him since?  I hope it all
smooths over.

I'll say a prayer for you both.

Kathy


--- In Epithelioid_Sarcoma@yahoogroups.com, "vagnbietjie" <joannuttall76@...>
wrote:
>
> Hi,
> I know it's normal to be angry with a diagnosis of E.S.,  but is it normal to
take it out on the family member's that are there to help you?
> Rich is very scared I know.   He has just got the results of his CT scan after
his radiation,  his tumor has grown and surgery is only scheduled for the 21st
January  (that would be 12 weeks,  instead of the 4-6 weeks healing period post
radiation.)   I asked him if I could make a suggestion,  he said  "yes,  I can
see you are are trying to say some thing."   So I suggested he phone the
surgeons office an d ask if the delay in surgery would be wise seeing that the
tumor had grown so after  6 weeks.   He didn't answer at all.
> In the end I came back home as my son wasn't even speaking to me,  and when I
spoke to him he would answer in such an angry way.   I asked him if he realized
how short he was with me.   There were other things which were so difficult too.
He denied it,  but was totally different to every one else.
> Rich is off his dilaudid now and able to drive himself around.   Infact he was
staying away from his apartment all day,  hence my decision to come home sooner
than anticipated.
> If any one has experienced this,  could you let me know how to deal with it
without taking it personally,  which I have.
> Thanks,
> Take care,
> Joan
>

Reply | Forward | Messages in this Topic (8)
#122 From: "vagnbietjie" <joannuttall76@...>
Date: Mon Nov 23, 2009 6:00 pm
Subject: dealing with anger 		vagnbietjie
Offline Offline
Send Email Send Email
  
Hi,
I know it's normal to be angry with a diagnosis of E.S.,  but is it normal to
take it out on the family member's that are there to help you?
Rich is very scared I know.   He has just got the results of his CT scan after
his radiation,  his tumor has grown and surgery is only scheduled for the 21st
January  (that would be 12 weeks,  instead of the 4-6 weeks healing period post
radiation.)   I asked him if I could make a suggestion,  he said  "yes,  I can
see you are are trying to say some thing."   So I suggested he phone the
surgeons office an d ask if the delay in surgery would be wise seeing that the
tumor had grown so after  6 weeks.   He didn't answer at all.
In the end I came back home as my son wasn't even speaking to me,  and when I
spoke to him he would answer in such an angry way.   I asked him if he realized
how short he was with me.   There were other things which were so difficult too.
He denied it,  but was totally different to every one else.
Rich is off his dilaudid now and able to drive himself around.   Infact he was
staying away from his apartment all day,  hence my decision to come home sooner
than anticipated.
If any one has experienced this,  could you let me know how to deal with it
without taking it personally,  which I have.
Thanks,
Take care,
Joan

Reply | Forward | Messages in this Topic (8)
#121 From: "Tom Lamb" <lambli@...>
Date: Sat Nov 21, 2009 1:29 pm
Subject: RE: Re: Good News 		lambli47
Offline Offline
Send Email Send Email
 

Thank you, it is special coming from you.

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of KathyZ
Sent: Friday, November 20, 2009 10:37 PM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] Re: Good News

 

 

Tom, what GREAT news!!! I'm so very, very happy for you. I pray that all of your scans go as well!

I know you must feel such a weight lifted.

Go forth and live to the fullest.

Kathy

--- In Epithelioid_Sarcoma@yahoogroups.com, "Tom Lamb" <lambli@...> wrote:
>
> Had great news from Pittsburgh today, no cancer and no new tumors. They have
> a new sarcoma doctor there and he still wants me to come back in 6 months. I
> was supposed to go yearly now. My oncologist was very interested in the
> people I have met on here and what are some of the concerns. They are
> getting a better clinical outlook based on those with E.S.. I told him about
> the brave people on here and he is going to monitor more closely.
>
> God Bless You All and Keep The Faith,
>
> Tom Lamb
>


Reply | Forward | Messages in this Topic (4)
#120 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Sat Nov 21, 2009 5:38 am
Subject: Re: Good News 		vagnbietjie
Offline Offline
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Fantastic news Tom!!!!!!
Wow,   now you can relax again.   I'm so impressed that you got the results so quickly!
Your family must be rejoicing wildly,  hope you have a super week end.
You take care,
Joan

On Fri, Nov 20, 2009 at 5:28 PM, Tom Lamb <lambli@...> wrote:
 

Had great news from Pittsburgh today, no cancer and no new tumors. They have a new sarcoma doctor there and he still wants me to come back in 6 months. I was supposed to go yearly now. My oncologist was very interested in the people I have met on here and what are some of the concerns. They are getting a better clinical outlook based on those with E.S.. I told him about the brave people on here and he is going to monitor more closely.

God Bless You All and Keep The Faith,

Tom Lamb



Reply | Forward | Messages in this Topic (4)
#119 From: "KathyZ" <kathy.zuber@...>
Date: Sat Nov 21, 2009 3:37 am
Subject: Re: Good News 		kathy.zuber
Online Now Online Now
Send Email Send Email
  
Tom, what GREAT news!!! I'm so very, very happy for you.  I pray that all of
your scans go as well!

I know you must feel such a weight lifted.

Go forth and live to the fullest.

Kathy

--- In Epithelioid_Sarcoma@yahoogroups.com, "Tom Lamb" <lambli@...> wrote:
>
> Had great news from Pittsburgh today, no cancer and no new tumors. They have
> a new sarcoma doctor there and he still wants me to come back in 6 months. I
> was supposed to go yearly now. My oncologist was very interested in the
> people I have met on here and what are some of the concerns. They are
> getting a better clinical outlook based on those with E.S.. I told him about
> the brave people on here and he is going to monitor more closely.
>
> God Bless You All and Keep The Faith,
>
> Tom Lamb
>

Reply | Forward | Messages in this Topic (4)
#118 From: "Tom Lamb" <lambli@...>
Date: Sat Nov 21, 2009 12:28 am
Subject: Good News 		lambli47
Offline Offline
Send Email Send Email
 

Had great news from Pittsburgh today, no cancer and no new tumors. They have a new sarcoma doctor there and he still wants me to come back in 6 months. I was supposed to go yearly now. My oncologist was very interested in the people I have met on here and what are some of the concerns. They are getting a better clinical outlook based on those with E.S.. I told him about the brave people on here and he is going to monitor more closely.

God Bless You All and Keep The Faith,

Tom Lamb


Reply | Forward | Messages in this Topic (4)
#117 From: "Tom Lamb" <lambli@...>
Date: Thu Nov 19, 2009 10:35 pm
Subject: Prayers going your way for Friday Tom 		lambli47
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Thank you so much Joan. I wrote on my facebook as to the dichotomy of feelings I have. It happens every time I get one of these.  I can’t wait for tomorrow to be over, and I wish it would not come. Thank you so much to all the members of this group for all of your support!


Reply | Forward | Messages in this Topic (2)
#116 From: "vagnbietjie" <joannuttall76@...>
Date: Thu Nov 19, 2009 8:12 pm
Subject: Prayers going your way for Friday Tom 		vagnbietjie
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Hi Tom,
Thinking and praying for a positive outcome for Fridays Cat scan.   Let us know
when you get the results,  and we'll all celebrate the good outcome.
Take care
Joan

Reply | Forward | Messages in this Topic (2)
#115 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Wed Nov 18, 2009 8:06 am
Subject: Re: new member 		vagnbietjie
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All great suggestions!   Thanks a lot Tom.
Thanks for your e-mail too.   I'm sure I'll be using it.
Take care,
Joan

On Tue, Nov 17, 2009 at 4:31 AM, Tom Lamb <lambli@...> wrote:
 

I gained weight while taking chemo. One of the medicines gives you constipation. I took Senacol to help, ask your doctor what he thinks. I also remember getting what I call “chemo-vision”. Things appeared brighter and when you closed your eyes you saw spots. Try to stay out of bright areas. You must also limit his access to the public and stay out of public places. Please keep in touch.

Tom Lamb

Here is my e-mail if you want to send me a question directly lambli@... .

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Monday, November 16, 2009 11:38 PM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

What a great idea,  listening to some thing funny and just pass the time during chemo,  laughing.   Really great idea,  you are obviously an upbeat kinda guy!!
Rich has put on wight and looking so good now!!   Must be his mum's cooking!!  haha.  

Yes,  Rich will definitely get a central venous port,  I guess that is what the medi port is you refer to.   When I first came down to be with Rich,  he was so weak,  and scared.   It's so strange,  I'd just get a feeling that he was awake in his room,  I'd call to him softly,  and yes he was awake and just wanted me to sit and chat to him.   We had many apple pie and ice cream parties in the wee hours.

Now that he is strong again,  and surgery set for January,  he doesn't want to talk about any part of it.   Ofcourse that is fine too.   I just find your and Kathy's e-mails so helpful.   So good just to chat about concerns without letting on that I'm worried.

Take care,  thinking and praying for your Friday scan.

Joan  

On Mon, Nov 16, 2009 at 6:12 PM, Tom Lamb <lambli@...> wrote:

 

Sorry for getting back so late Joan. Thank you for your concern. When I got my chemo I had different rounds of different chemo.  I would go to the cancer center and stay there for 6-8 hours. They gave me a anti nausea shots when I sat down. I never got sick. I did develop dislikes for food I liked before. I ate salami sandwiches when I worked, but after I started the chemo I could not stand the smell of it. Other foods had the same effect. I will try to get you the names of the medication they gave me. I had a medi-port put in for the chemo. I actually had to have a second one put in because the first one clogged. I still have it in and have it flushed every 4 to 5 weeks.  Kathy is telling me to leave it in and that is a subject that I will discuss Friday with my doctors. One of my rounds of chemo I had to wear a pump for 3 days. All of my hair fell out. That is why some people get shaved heads before they start treatment. It all returned except for the area where I received  my radiation. I used to listen to XM radio while I sat in the chair getting chemo. I would put the comedy channel on and laugh, the nurses thought it was great. I was in a room with about 20 others going in and out all day. I was on a week and off for two. I would work when I was off those two weeks. My wife and kids were very helpful and supportive. My co-workers and relatives also were. Strangers used to send me prayer cards. My church always checked if my family needed anything. My hardest times were when I was alone. I would think about my family. Don’t be afraid to ask for help. Rich needs to be focused on his health and you need to help with the ancillary items. Ask questions at all levels. Please keep in touch and keep the faith and I will get the names of those medicines.

Tom Lamb

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Sunday, November 15, 2009 12:27 AM

Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

Thanks so much for getting back to me.   Firstly,  Congratulations on your two year birthday!!   I'll mark Friday the 20th and say a prayer for you,  good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember going for the check up's,  sort of makes one a little apprehensive to be sure.

You have gone through a lot too.   Gives us a lot of hope.   Thank you so much for sharing.   From what I understand,  the plan will be to do surgery,   more radiation and chemo  (this time)  then more  and scans,  and depending on that they plan the next move as nec.

Tom could you give me an idea about chemo and what you went through?   Did you have good anti nausea medication,  and what was it's name?  

Thanks again for your e-mail,  it has given me a lot of hope.

Take care and good luck for Friday.

Joan

 

On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:

 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan

 

 



Reply | Forward | Messages in this Topic (13)
#114 From: "Tom Lamb" <lambli@...>
Date: Tue Nov 17, 2009 11:31 am
Subject: RE: new member 		lambli47
Offline Offline
Send Email Send Email
 

I gained weight while taking chemo. One of the medicines gives you constipation. I took Senacol to help, ask your doctor what he thinks. I also remember getting what I call “chemo-vision”. Things appeared brighter and when you closed your eyes you saw spots. Try to stay out of bright areas. You must also limit his access to the public and stay out of public places. Please keep in touch.

Tom Lamb

Here is my e-mail if you want to send me a question directly lambli@... .

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Monday, November 16, 2009 11:38 PM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

What a great idea,  listening to some thing funny and just pass the time during chemo,  laughing.   Really great idea,  you are obviously an upbeat kinda guy!!
Rich has put on wight and looking so good now!!   Must be his mum's cooking!!  haha.  

Yes,  Rich will definitely get a central venous port,  I guess that is what the medi port is you refer to.   When I first came down to be with Rich,  he was so weak,  and scared.   It's so strange,  I'd just get a feeling that he was awake in his room,  I'd call to him softly,  and yes he was awake and just wanted me to sit and chat to him.   We had many apple pie and ice cream parties in the wee hours.

Now that he is strong again,  and surgery set for January,  he doesn't want to talk about any part of it.   Ofcourse that is fine too.   I just find your and Kathy's e-mails so helpful.   So good just to chat about concerns without letting on that I'm worried.

Take care,  thinking and praying for your Friday scan.

Joan  

On Mon, Nov 16, 2009 at 6:12 PM, Tom Lamb <lambli@...> wrote:

 

Sorry for getting back so late Joan. Thank you for your concern. When I got my chemo I had different rounds of different chemo.  I would go to the cancer center and stay there for 6-8 hours. They gave me a anti nausea shots when I sat down. I never got sick. I did develop dislikes for food I liked before. I ate salami sandwiches when I worked, but after I started the chemo I could not stand the smell of it. Other foods had the same effect. I will try to get you the names of the medication they gave me. I had a medi-port put in for the chemo. I actually had to have a second one put in because the first one clogged. I still have it in and have it flushed every 4 to 5 weeks.  Kathy is telling me to leave it in and that is a subject that I will discuss Friday with my doctors. One of my rounds of chemo I had to wear a pump for 3 days. All of my hair fell out. That is why some people get shaved heads before they start treatment. It all returned except for the area where I received  my radiation. I used to listen to XM radio while I sat in the chair getting chemo. I would put the comedy channel on and laugh, the nurses thought it was great. I was in a room with about 20 others going in and out all day. I was on a week and off for two. I would work when I was off those two weeks. My wife and kids were very helpful and supportive. My co-workers and relatives also were. Strangers used to send me prayer cards. My church always checked if my family needed anything. My hardest times were when I was alone. I would think about my family. Don’t be afraid to ask for help. Rich needs to be focused on his health and you need to help with the ancillary items. Ask questions at all levels. Please keep in touch and keep the faith and I will get the names of those medicines.

Tom Lamb

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Sunday, November 15, 2009 12:27 AM

Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

Thanks so much for getting back to me.   Firstly,  Congratulations on your two year birthday!!   I'll mark Friday the 20th and say a prayer for you,  good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember going for the check up's,  sort of makes one a little apprehensive to be sure.

You have gone through a lot too.   Gives us a lot of hope.   Thank you so much for sharing.   From what I understand,  the plan will be to do surgery,   more radiation and chemo  (this time)  then more  and scans,  and depending on that they plan the next move as nec.

Tom could you give me an idea about chemo and what you went through?   Did you have good anti nausea medication,  and what was it's name?  

Thanks again for your e-mail,  it has given me a lot of hope.

Take care and good luck for Friday.

Joan

 

On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:

 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan

 

 


Reply | Forward | Messages in this Topic (13)
#113 From: "vagnbietjie" <joannuttall76@...>
Date: Tue Nov 17, 2009 5:55 am
Subject: Hi Kathy 		vagnbietjie
Offline Offline
Send Email Send Email
  
So nice to hear from you!   Gosh you're a gem.   You're quite right though, 
what is money?   Absolutely nothing when compared to how one can use it to help
our family and friends.   I'm so glad you and Tom both got so much support.   We
have had such an out pouring of love and support too.   This group is fantastic.
Thanks so much for starting it!!   We immigrated from South Africa 34 years ago,
and cousins and other family we had lost contact with,  or just heard from at
Christmas time,  are e-mailing and helping us through this time with their
prayers.   Rich said when he had his first surgery he was so calm and felt the
prayers had held him up through that time.   He did so well too.
Thanks so much for your valuable input.   I never tire from it,  no worries!!
Take care then,
Joan

Reply | Forward | Messages in this Topic (1)
#112 From: "KathyZ" <kathy.zuber@...>
Date: Tue Nov 17, 2009 5:40 am
Subject: Joan and Tom 		kathy.zuber
Online Now Online Now
Send Email Send Email
  
It is so great to hear the two of you talking.  I love the support we can give
to each other.

I was amazed at the support we got from people all thru our journey.  I was
humbled by it.

During our first battle, the people I worked with donated their bonuses to
Stephanie and me.  From 3 of the offices of people I worked with.  It was
amazing.  They gave us over $8000!!!!  They gave us food baskets.  My boss even
sent in payroll for me so I would get paid the weeks I was in Ann Arbor with
Stephanie during Chemo.  They paid me and I wasn't even there!!

These people were the greatest.  A few years later I was able to get Stephanie a
job for the same company, at one of the other offices.  Those people were there
for her during her second battle.

Then toward the end we had planned a fundraiser.  Steph had been on disability,
thru work, long enough that it was gonna run out.  She had an apartment and a
car payment.  She didn't want to lose them because that was like giving up-and
she couldn't.

We tried to help, but it was a financial burden on us too, but we kept them
going.  I had to file for bankruptcy the following year, because I took money
from my business to pay for her and bills I had for the business weren't getting
paid.  I lost my business, but I'd give a dozen to do it again.

Anyway, the fundraiser - it was going to be on Saturday and she went into the
hospital early in the week because she was having trouble breathing.  She told
every doctor who came into the room that she was leaving on Friday so she could
go to the fundraiser.  Well, she didn't make it.  They took videos and brought
them up for her to watch on Sunday.  There were people there from our church who
I hadn't talked to in years, since our boys were young.  I didn't even think
they remembered us.

Just about everyone who worked with Stephanie showed up.  They had about a 1.5
hour drive to come.  And they all came back a week later, for her funeral.

I'm sorry I go on and on, but I can't stop myself.  I'm sorry.

You have to be positive and educated.  Never give up and never lose hope.

I always felt that my daughter wouldn't die without one hell of a fight and she
wouldn't die because we didn't have the money or because we didn't do everything
we possibly could do with what we knew.

God bless you both.

Reply | Forward | Messages in this Topic (1)
#111 From: "vagnbietjie" <joannuttall76@...>
Date: Tue Nov 17, 2009 5:33 am
Subject: Hi Kathy 		vagnbietjie
Offline Offline
Send Email Send Email
  
Hi Kathy,
So glad you added your bit of info.   I have made a note of the meds,  Rich is
not looking forward to chemo,  but Tom's idea is a great one, to occupy ones
mind with happy thoughts while the meds are infusing.
Yes,  the side effects must be so difficult,  especially when your appetite goes
etc,  etc,.
I'm so glad I have met the group,  so nice to be able to discuss things that I'm
apprehensive about.
Take care then,
Joan

Reply | Forward | Messages in this Topic (1)
#110 From: "vagnbietjie" <joannuttall76@...>
Date: Tue Nov 17, 2009 5:26 am
Subject: Re: new member 		vagnbietjie
Offline Offline
Send Email Send Email
  
--- In Epithelioid_Sarcoma@yahoogroups.com, "KathyZ" <kathy.zuber@...> wrote:
>
> Joan, I may be butting in, but the anti-nausea meds Stephanie took were
Anzemet and she also took Ativan and Decadron.  She was also given Marinol
(marijuana tablets)-they helped with nausea and gave her a bit of an appetite,
for a while.
>
> While she took AIM, she was very sensative to smells.  Her urine was one of
the biggest problems.  We got some plug-in air fresheners to help with that. 
Foods were a problem.  We had bought one microwave meal for her, while we stayed
in a hotel during Chemo, and the smell made her vomit.
>
> They were very vigilent to try to keep her from vomitting.  The meds worked
very good for that.
>
> The hair loss was her biggest fear, and she lost it in 2001 and again in 2006.
>
> --- In Epithelioid_Sarcoma@yahoogroups.com, Elizabeth Joan Nuttall
<joannuttall76@> wrote:
> >
> > Hi Tom,
> > Thanks so much for getting back to me.   Firstly,  Congratulations on your
> > two year birthday!!   I'll mark Friday the 20th and say a prayer for you,
> > good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember
> > going for the check up's,  sort of makes one a little apprehensive to be
> > sure.
> > You have gone through a lot too.   Gives us a lot of hope.   Thank you so
> > much for sharing.   From what I understand,  the plan will be to do
> > surgery,   more radiation and chemo  (this time)  then more  and scans,  and
> > depending on that they plan the next move as nec.
> > Tom could you give me an idea about chemo and what you went through?   Did
> > you have good anti nausea medication,  and what was it's name?
> > Thanks again for your e-mail,  it has given me a lot of hope.
> > Take care and good luck for Friday.
> > Joan
> >
> >
> > On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@> wrote:
> >
> > >
> > >
> > >  It looks as though you have done well for your son. It is a lot to go
> > > through and you must have faith in your doctors. I took Ifosamide and
wonder
> > > why it is not available?  It is good to locate as much information as
> > > possible to help him along. I have been cancer free for almost two years
> > > now. I go Friday the 20th for another CAT scan. Mine was in my groin area
> > > on my left leg so amputation was not a possibility. I had a total of 17
> > > lymph nodes removed. Please feel free to contact me if you have any more
> > > concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in
> > > an 8 month period. So I know that this all seems so compressed. Please
feel
> > > free to e-mail me anytime. Keep the faith!
> > >
> > > Tom Lamb
> > >
> > > lambli@
> > >
> > >
> > >
> > > *From:* Epithelioid_Sarcoma@yahoogroups.com [mailto:
> > > Epithelioid_Sarcoma@yahoogroups.com] *On Behalf Of *vagnbietjie
> > > *Sent:* Saturday, November 14, 2009 4:21 AM
> > > *To:* Epithelioid_Sarcoma@yahoogroups.com
> > > *Subject:* [Epithelioid_Sarcoma] new member
> > >
> > >
> > >
> > >
> > >
> > > Hi,
> > > I have just joined the group. My son is 41 years old and has had E.S. for
> > > about a year now. He had his first surgery in July of this year, and when
> > > the path results finally came back, he started receiving all the info from
> > > our local cancer agency in Victoria, B.C. Canada. What a time it has been.
> > > We went for a second opinion in Seattle, Washington. They were so helpful!
> > > They had seen a lot of this type of sarcoma and helped us to look further
> > > afield in Canada to find a sarcoma specialist who does limb sparing
> > > surgeries. They wanted to do a fore quarter amputation, which scared us
so.
> > > Rich had the initial tumor under his right axilla. Unfortunately it has
> > > already spread to his chest wall. He has just finished a 5 week course of
> > > radiation, the chemo that was suggested wasn't available to us (Ifosamide)
> > > Rich's surgery is due to take place in Calgary, Alberta in January. The
> > > tumor has wrapped around the inominate artery and veins leading to his
right
> > > arm, and also some nerves. There will also be a plastic sarcoma specialist
> > > who will do the vessel grafting and nerve grafting (I had no idea they did
> > > this) As Rich is single and has never had a partner, I have come down to
> > > take care of him. He was pretty sick when I first got here, but has
improved
> > > tremendously, even gained some weight. He is being investigated now for
> > > anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough.
> > > He is very positive though and is determined to beat this.
> > > Any communicative support would be so appreciated. I feel so scared but
> > > daren't show it!!
> > > Take care all,
> > > Joan
> > >
> > >
> > >
> >
>

Reply | Forward | Messages in this Topic (13)
#109 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Tue Nov 17, 2009 4:37 am
Subject: Re: new member 		vagnbietjie
Offline Offline
Send Email Send Email
 
Hi Tom,
What a great idea,  listening to some thing funny and just pass the time during chemo,  laughing.   Really great idea,  you are obviously an upbeat kinda guy!!
Rich has put on wight and looking so good now!!   Must be his mum's cooking!!  haha.  
Yes,  Rich will definitely get a central venous port,  I guess that is what the medi port is you refer to.   When I first came down to be with Rich,  he was so weak,  and scared.   It's so strange,  I'd just get a feeling that he was awake in his room,  I'd call to him softly,  and yes he was awake and just wanted me to sit and chat to him.   We had many apple pie and ice cream parties in the wee hours.
Now that he is strong again,  and surgery set for January,  he doesn't want to talk about any part of it.   Ofcourse that is fine too.   I just find your and Kathy's e-mails so helpful.   So good just to chat about concerns without letting on that I'm worried.
Take care,  thinking and praying for your Friday scan.
Joan  
On Mon, Nov 16, 2009 at 6:12 PM, Tom Lamb <lambli@...> wrote:
 

Sorry for getting back so late Joan. Thank you for your concern. When I got my chemo I had different rounds of different chemo.  I would go to the cancer center and stay there for 6-8 hours. They gave me a anti nausea shots when I sat down. I never got sick. I did develop dislikes for food I liked before. I ate salami sandwiches when I worked, but after I started the chemo I could not stand the smell of it. Other foods had the same effect. I will try to get you the names of the medication they gave me. I had a medi-port put in for the chemo. I actually had to have a second one put in because the first one clogged. I still have it in and have it flushed every 4 to 5 weeks.  Kathy is telling me to leave it in and that is a subject that I will discuss Friday with my doctors. One of my rounds of chemo I had to wear a pump for 3 days. All of my hair fell out. That is why some people get shaved heads before they start treatment. It all returned except for the area where I received  my radiation. I used to listen to XM radio while I sat in the chair getting chemo. I would put the comedy channel on and laugh, the nurses thought it was great. I was in a room with about 20 others going in and out all day. I was on a week and off for two. I would work when I was off those two weeks. My wife and kids were very helpful and supportive. My co-workers and relatives also were. Strangers used to send me prayer cards. My church always checked if my family needed anything. My hardest times were when I was alone. I would think about my family. Don’t be afraid to ask for help. Rich needs to be focused on his health and you need to help with the ancillary items. Ask questions at all levels. Please keep in touch and keep the faith and I will get the names of those medicines.

Tom Lamb

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Sunday, November 15, 2009 12:27 AM


To: Epithelioid_Sarcoma@yahoogroups.com
Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

Thanks so much for getting back to me.   Firstly,  Congratulations on your two year birthday!!   I'll mark Friday the 20th and say a prayer for you,  good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember going for the check up's,  sort of makes one a little apprehensive to be sure.

You have gone through a lot too.   Gives us a lot of hope.   Thank you so much for sharing.   From what I understand,  the plan will be to do surgery,   more radiation and chemo  (this time)  then more  and scans,  and depending on that they plan the next move as nec.

Tom could you give me an idea about chemo and what you went through?   Did you have good anti nausea medication,  and what was it's name?  

Thanks again for your e-mail,  it has given me a lot of hope.

Take care and good luck for Friday.

Joan

 

On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:

 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan

 



Reply | Forward | Messages in this Topic (13)
#108 From: "Tom Lamb" <lambli@...>
Date: Tue Nov 17, 2009 1:12 am
Subject: RE: new member 		lambli47
Offline Offline
Send Email Send Email
 

Sorry for getting back so late Joan. Thank you for your concern. When I got my chemo I had different rounds of different chemo.  I would go to the cancer center and stay there for 6-8 hours. They gave me a anti nausea shots when I sat down. I never got sick. I did develop dislikes for food I liked before. I ate salami sandwiches when I worked, but after I started the chemo I could not stand the smell of it. Other foods had the same effect. I will try to get you the names of the medication they gave me. I had a medi-port put in for the chemo. I actually had to have a second one put in because the first one clogged. I still have it in and have it flushed every 4 to 5 weeks.  Kathy is telling me to leave it in and that is a subject that I will discuss Friday with my doctors. One of my rounds of chemo I had to wear a pump for 3 days. All of my hair fell out. That is why some people get shaved heads before they start treatment. It all returned except for the area where I received  my radiation. I used to listen to XM radio while I sat in the chair getting chemo. I would put the comedy channel on and laugh, the nurses thought it was great. I was in a room with about 20 others going in and out all day. I was on a week and off for two. I would work when I was off those two weeks. My wife and kids were very helpful and supportive. My co-workers and relatives also were. Strangers used to send me prayer cards. My church always checked if my family needed anything. My hardest times were when I was alone. I would think about my family. Don’t be afraid to ask for help. Rich needs to be focused on his health and you need to help with the ancillary items. Ask questions at all levels. Please keep in touch and keep the faith and I will get the names of those medicines.

Tom Lamb

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of Elizabeth Joan Nuttall
Sent: Sunday, November 15, 2009 12:27 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: Re: [Epithelioid_Sarcoma] new member

 

 

Hi Tom,

Thanks so much for getting back to me.   Firstly,  Congratulations on your two year birthday!!   I'll mark Friday the 20th and say a prayer for you,  good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember going for the check up's,  sort of makes one a little apprehensive to be sure.

You have gone through a lot too.   Gives us a lot of hope.   Thank you so much for sharing.   From what I understand,  the plan will be to do surgery,   more radiation and chemo  (this time)  then more  and scans,  and depending on that they plan the next move as nec.

Tom could you give me an idea about chemo and what you went through?   Did you have good anti nausea medication,  and what was it's name?  

Thanks again for your e-mail,  it has given me a lot of hope.

Take care and good luck for Friday.

Joan

 

On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:

 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan

 


Reply | Forward | Messages in this Topic (13)
#107 From: Timothy Neuman <star.designer@...>
Date: Mon Nov 16, 2009 4:14 pm
Subject: Re: new member 		star.designe...
Offline Offline
Send Email Send Email
 
Dear Joan,
 
First off I commend you and your husband for getting a second option for your son. I was hit with ES last year in September, I found a lump in chest and after many test it turned out to be ES. I had surgery to remove it and my doctors at the time told me I had the Highest grade of ES possible and that I needed extensive surgery to save my life. I did not agree with my first set of doctors, so first, I read as much information as I could find on ES and then I decided what I believed "Quality of Life" was for me and then I started looking for a doctor that would work with me to achieve it. I have seen and talked to  all the top doctors in Southern California, from UCLA, Cedars Sinai, City of Hope, Loma Linda, Eisenhower Lucy Curci Cancer Center to name a few till I found UCSF in San Francisco. The team of Doctors I met there were all specialists in the field of Sarcomas and were willing to work with me to find the least invasive way to remove my tumors and still offer me the "Quality of Life" that I needed. 4 weeks ago I under went my second surgery to remove a new tumor  from my Chest along with a 4" diameter of tissue and then had a fairly new procedure done which was to radiate me while I was still open during surgery. This method is great for the doctors are able to radiate the exact spot were the Cancer was without damaging any surrounding tissue, I would highly recommend that you ask your son's doctor if this is available in Canada. I came out of my surgery just fine and was able to leave the Hospital the next day, I will be starting a follow-up radiation treatment in December, but will only have to undergo minimum doses. I too did not qualify for chemo treatment do to the grade of my ES, However the treatment the I am on I feel is the best for me. To make a long story shorter this is my third occurrence with Cancer in the last 9 years and I have learned that, "Quality of Life" means so much more to me then what a doctors term for it might be. Please asked your son what he feels his "Quality of Life" should be after surgery and then make sure his doctors are willing to work with him to achieve it. It truly helps the healing process. Although I know I'm not cured from ES, I am happier now because my "Quality of Life" is what I wanted it to be. Never give up hope, never settle for just one answer, always keep your son's options open and remember anything is possible in Life. The most important thing to do is make sure your son's needs and requests are met by the doctors every step of the way. I have fought a good battle and will continue to fight this battle for as long as I can while continuing to live my Life to the fullest. My prayers go out to you and your son, and I send you strength and encouragement to fight this battle on your sons terms while working with his doctors. I would be more than happy to give you the names of my doctors at UCSF if you would like, and also I would be happy to talk to you or your son to help you along with this process.
Just remember you and your son are not alone, you found this site and I hope on it, you have found new friends that will help you and your son get through this.
God Bless you and Never give up HOPE!
 
Tim Neuman

--- On Sat, 11/14/09, vagnbietjie <joannuttall76@...> wrote:

From: vagnbietjie <joannuttall76@...>
Subject: [Epithelioid_Sarcoma] new member
To: Epithelioid_Sarcoma@yahoogroups.com
Date: Saturday, November 14, 2009, 1:20 AM

 
Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan


Reply | Forward | Messages in this Topic (13)
#106 From: "KathyZ" <kathy.zuber@...>
Date: Sun Nov 15, 2009 8:26 pm
Subject: Re: new member 		kathy.zuber
Online Now Online Now
Send Email Send Email
  
Joan, I may be butting in, but the anti-nausea meds Stephanie took were Anzemet
and she also took Ativan and Decadron.  She was also given Marinol (marijuana
tablets)-they helped with nausea and gave her a bit of an appetite, for a while.

While she took AIM, she was very sensative to smells.  Her urine was one of the
biggest problems.  We got some plug-in air fresheners to help with that.  Foods
were a problem.  We had bought one microwave meal for her, while we stayed in a
hotel during Chemo, and the smell made her vomit.

They were very vigilent to try to keep her from vomitting.  The meds worked very
good for that.

The hair loss was her biggest fear, and she lost it in 2001 and again in 2006.

--- In Epithelioid_Sarcoma@yahoogroups.com, Elizabeth Joan Nuttall
<joannuttall76@...> wrote:
>
> Hi Tom,
> Thanks so much for getting back to me.   Firstly,  Congratulations on your
> two year birthday!!   I'll mark Friday the 20th and say a prayer for you,
> good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember
> going for the check up's,  sort of makes one a little apprehensive to be
> sure.
> You have gone through a lot too.   Gives us a lot of hope.   Thank you so
> much for sharing.   From what I understand,  the plan will be to do
> surgery,   more radiation and chemo  (this time)  then more  and scans,  and
> depending on that they plan the next move as nec.
> Tom could you give me an idea about chemo and what you went through?   Did
> you have good anti nausea medication,  and what was it's name?
> Thanks again for your e-mail,  it has given me a lot of hope.
> Take care and good luck for Friday.
> Joan
>
>
> On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:
>
> >
> >
> >  It looks as though you have done well for your son. It is a lot to go
> > through and you must have faith in your doctors. I took Ifosamide and wonder
> > why it is not available?  It is good to locate as much information as
> > possible to help him along. I have been cancer free for almost two years
> > now. I go Friday the 20th for another CAT scan. Mine was in my groin area
> > on my left leg so amputation was not a possibility. I had a total of 17
> > lymph nodes removed. Please feel free to contact me if you have any more
> > concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in
> > an 8 month period. So I know that this all seems so compressed. Please feel
> > free to e-mail me anytime. Keep the faith!
> >
> > Tom Lamb
> >
> > lambli@...
> >
> >
> >
> > *From:* Epithelioid_Sarcoma@yahoogroups.com [mailto:
> > Epithelioid_Sarcoma@yahoogroups.com] *On Behalf Of *vagnbietjie
> > *Sent:* Saturday, November 14, 2009 4:21 AM
> > *To:* Epithelioid_Sarcoma@yahoogroups.com
> > *Subject:* [Epithelioid_Sarcoma] new member
> >
> >
> >
> >
> >
> > Hi,
> > I have just joined the group. My son is 41 years old and has had E.S. for
> > about a year now. He had his first surgery in July of this year, and when
> > the path results finally came back, he started receiving all the info from
> > our local cancer agency in Victoria, B.C. Canada. What a time it has been.
> > We went for a second opinion in Seattle, Washington. They were so helpful!
> > They had seen a lot of this type of sarcoma and helped us to look further
> > afield in Canada to find a sarcoma specialist who does limb sparing
> > surgeries. They wanted to do a fore quarter amputation, which scared us so.
> > Rich had the initial tumor under his right axilla. Unfortunately it has
> > already spread to his chest wall. He has just finished a 5 week course of
> > radiation, the chemo that was suggested wasn't available to us (Ifosamide)
> > Rich's surgery is due to take place in Calgary, Alberta in January. The
> > tumor has wrapped around the inominate artery and veins leading to his right
> > arm, and also some nerves. There will also be a plastic sarcoma specialist
> > who will do the vessel grafting and nerve grafting (I had no idea they did
> > this) As Rich is single and has never had a partner, I have come down to
> > take care of him. He was pretty sick when I first got here, but has improved
> > tremendously, even gained some weight. He is being investigated now for
> > anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough.
> > He is very positive though and is determined to beat this.
> > Any communicative support would be so appreciated. I feel so scared but
> > daren't show it!!
> > Take care all,
> > Joan
> >
> >
> >
>

Reply | Forward | Messages in this Topic (13)
#105 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Sun Nov 15, 2009 5:27 am
Subject: Re: new member 		vagnbietjie
Offline Offline
Send Email Send Email
 
Hi Tom,
Thanks so much for getting back to me.   Firstly,  Congratulations on your two year birthday!!   I'll mark Friday the 20th and say a prayer for you,  good luck with the CT scan.   I had a melanoma 20 years ago,  and I remember going for the check up's,  sort of makes one a little apprehensive to be sure.
You have gone through a lot too.   Gives us a lot of hope.   Thank you so much for sharing.   From what I understand,  the plan will be to do surgery,   more radiation and chemo  (this time)  then more  and scans,  and depending on that they plan the next move as nec.
Tom could you give me an idea about chemo and what you went through?   Did you have good anti nausea medication,  and what was it's name?  
Thanks again for your e-mail,  it has given me a lot of hope.
Take care and good luck for Friday.
Joan
 

On Sat, Nov 14, 2009 at 9:40 AM, Tom Lamb <lambli@...> wrote:
 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan



Reply | Forward | Messages in this Topic (13)
#104 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Sun Nov 15, 2009 5:13 am
Subject: Re: Re: new member 		vagnbietjie
Offline Offline
Send Email Send Email
 
Hi Kathy,
The last part of the letter didn't go through.   I wanted to thank you for giving me your cell #  if I needed some one to talk to.   I will only use that if I really have to.   Thanks you so much,  you're sweet and kind!
Take care then,
Joan

On Sat, Nov 14, 2009 at 10:05 PM, Elizabeth Joan Nuttall <joannuttall76@...> wrote:
Hi Kathy,
Thanks so much for replying to my e-mail.    Goodness,  I'm so sorry to hear about your daughter.   It is the hardest thing you've ever had to go through,  I'm sure.
The oncology department in Victoria,  just said that chemo wasn't an option for Rich.   I had read all I could on E.S. on the net,  and that is why we went to Seattle.   They advised us to go for it due to Rich''s age and ofcourse the aggressiveness of E.S.   So we asked for it on our return to Canada,  where the chemo oncologist eventually said it was too late before the surgery scheduled for January.   We have since found an oncologist that will give Rich Adriamycin and Ifosamide once he has healed from his Jan surgery.   We have found we have had to  "swim upstream,  against a very strong current"   It hasn't been easy,  not sure if they didn't like the fact that we went to Seattle for a second opinion,  but this is our son and both my husband and I will !

On Sat, Nov 14, 2009 at 9:30 AM, KathyZ <kathy.zuber@...> wrote:
 

Hello, Joan

This is Kathy, and I'm glad you've joined. Sorry to hear about your son. I know how hard it is to stay positive, but it is important.

My daughter and I both knew what her outcome was going to be, but never spoke (to each other) about it. I know she confided in her brother and sister-in-law and friends, and I, of course, talked to many people, but we stayed positive to each other.

One time I mentioned a 'living will' and she just freaked!!! She cried and asked me if I thought she was gonna die. It broke my heart. Of course I lied, and said no. From that day forward I never mentioned a negative word to her.

It was the hardest thing I've ever done - watch my daughter die. We gave it the good fight, for a solid year, after we found out she had a recurrance.

I guess what I'm trying to tell you is to be there for him, stay positive, and fight for the best possible treatment he can get.

I don't understand what you mean by saying that Ifosamide wasn't available??? Stephanie had Ifosamide, along with 2 other chemo drugs. They called it AIM. It consisted of Adriamycin, Ifosamide, and Mesna.

Here is an article, from PubMed, about the use of Chemo for Sarcoma:

Oncologist. 2009 Oct;14(10):1003-12. Epub 2009 Oct 6.

Should patients with high-risk soft tissue sarcoma receive adjuvant chemotherapy?
Schuetze SM, Patel S.

University of Michigan, C342 Med Inn, SPC 5848, 1500 E Medical Center Drive, Ann Arbor, Michigan, 48109-5848, USA. scotschu@...

Soft tissue sarcoma is a malignant connective tissue tumor that may arise anywhere in the body and from diverse mesenchymal elements. Its incidence is approximately 30 per million persons. The majority of patients with soft tissue sarcoma present with potentially life-threatening disease, and complete resection to obtain specimen margins free of tumor and radiation offer the best chance for local disease control. The risk of relapse and death from disease rises with increasing tumor stage, grade, and size. Adjuvant chemotherapy has been studied as a means to decrease the risk for disease recurrence in patients with localized soft tissue sarcoma at diagnosis, but the majority of trials reported on have been hampered by patient heterogeneity, low patient accrual, and short follow-up. Meta-analysis and reviews of institutional large series, in efforts to overcome some of the limitations, suggest that doxorubicin with ifosfamide reduces the risk for sarcoma recurrence and death in selected patients with high-grade, large, and chemotherapy-sensitive sarcoma subtypes to a clinically meaningful degree. In multiple analyses, patients with high-risk soft tissue sarcoma treated with chemotherapy have a >10% absolute lower risk for disease recurrence and longer disease-specific survival than patients treated without chemotherapy. In the absence of conclusive results from an adequately powered, randomized, controlled clinical trial, the available data support the use of chemotherapy in the management of high-risk, localized, soft tissue sarcoma.

Hang in there, be strong and positive, and remember God doesn't give you anything you can't handle!!!

If you have any questions - just ask. I'm sure any of the members here will be glad to help, as will I.

If you feel scared, or just need to talk, I'm here. My cell # is 616-706-3416.



--- In Epithelioid_Sarcoma@yahoogroups.com, "vagnbietjie" <joannuttall76@...> wrote:
>
> Hi,
> I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
> Any communicative support would be so appreciated. I feel so scared but daren't show it!!
> Take care all,
> Joan
>




Reply | Forward | Messages in this Topic (13)
#103 From: Elizabeth Joan Nuttall <joannuttall76@...>
Date: Sun Nov 15, 2009 5:05 am
Subject: Re: Re: new member 		vagnbietjie
Offline Offline
Send Email Send Email
 
Hi Kathy,
Thanks so much for replying to my e-mail.    Goodness,  I'm so sorry to hear about your daughter.   It is the hardest thing you've ever had to go through,  I'm sure.
The oncology department in Victoria,  just said that chemo wasn't an option for Rich.   I had read all I could on E.S. on the net,  and that is why we went to Seattle.   They advised us to go for it due to Rich''s age and ofcourse the aggressiveness of E.S.   So we asked for it on our return to Canada,  where the chemo oncologist eventually said it was too late before the surgery scheduled for January.   We have since found an oncologist that will give Rich Adriamycin and Ifosamide once he has healed from his Jan surgery.   We have found we have had to  "swim upstream,  against a very strong current"   It hasn't been easy,  not sure if they didn't like the fact that we went to Seattle for a second opinion,  but this is our son and both my husband and I will !

On Sat, Nov 14, 2009 at 9:30 AM, KathyZ <kathy.zuber@...> wrote:
 

Hello, Joan

This is Kathy, and I'm glad you've joined. Sorry to hear about your son. I know how hard it is to stay positive, but it is important.

My daughter and I both knew what her outcome was going to be, but never spoke (to each other) about it. I know she confided in her brother and sister-in-law and friends, and I, of course, talked to many people, but we stayed positive to each other.

One time I mentioned a 'living will' and she just freaked!!! She cried and asked me if I thought she was gonna die. It broke my heart. Of course I lied, and said no. From that day forward I never mentioned a negative word to her.

It was the hardest thing I've ever done - watch my daughter die. We gave it the good fight, for a solid year, after we found out she had a recurrance.

I guess what I'm trying to tell you is to be there for him, stay positive, and fight for the best possible treatment he can get.

I don't understand what you mean by saying that Ifosamide wasn't available??? Stephanie had Ifosamide, along with 2 other chemo drugs. They called it AIM. It consisted of Adriamycin, Ifosamide, and Mesna.

Here is an article, from PubMed, about the use of Chemo for Sarcoma:

Oncologist. 2009 Oct;14(10):1003-12. Epub 2009 Oct 6.

Should patients with high-risk soft tissue sarcoma receive adjuvant chemotherapy?
Schuetze SM, Patel S.

University of Michigan, C342 Med Inn, SPC 5848, 1500 E Medical Center Drive, Ann Arbor, Michigan, 48109-5848, USA. scotschu@...

Soft tissue sarcoma is a malignant connective tissue tumor that may arise anywhere in the body and from diverse mesenchymal elements. Its incidence is approximately 30 per million persons. The majority of patients with soft tissue sarcoma present with potentially life-threatening disease, and complete resection to obtain specimen margins free of tumor and radiation offer the best chance for local disease control. The risk of relapse and death from disease rises with increasing tumor stage, grade, and size. Adjuvant chemotherapy has been studied as a means to decrease the risk for disease recurrence in patients with localized soft tissue sarcoma at diagnosis, but the majority of trials reported on have been hampered by patient heterogeneity, low patient accrual, and short follow-up. Meta-analysis and reviews of institutional large series, in efforts to overcome some of the limitations, suggest that doxorubicin with ifosfamide reduces the risk for sarcoma recurrence and death in selected patients with high-grade, large, and chemotherapy-sensitive sarcoma subtypes to a clinically meaningful degree. In multiple analyses, patients with high-risk soft tissue sarcoma treated with chemotherapy have a >10% absolute lower risk for disease recurrence and longer disease-specific survival than patients treated without chemotherapy. In the absence of conclusive results from an adequately powered, randomized, controlled clinical trial, the available data support the use of chemotherapy in the management of high-risk, localized, soft tissue sarcoma.

Hang in there, be strong and positive, and remember God doesn't give you anything you can't handle!!!

If you have any questions - just ask. I'm sure any of the members here will be glad to help, as will I.

If you feel scared, or just need to talk, I'm here. My cell # is 616-706-3416.



--- In Epithelioid_Sarcoma@yahoogroups.com, "vagnbietjie" <joannuttall76@...> wrote:
>
> Hi,
> I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
> Any communicative support would be so appreciated. I feel so scared but daren't show it!!
> Take care all,
> Joan
>



Reply | Forward | Messages in this Topic (13)
#102 From: "Tom Lamb" <lambli@...>
Date: Sat Nov 14, 2009 4:40 pm
Subject: RE: new member 		lambli47
Offline Offline
Send Email Send Email
 

It looks as though you have done well for your son. It is a lot to go through and you must have faith in your doctors. I took Ifosamide and wonder why it is not available?  It is good to locate as much information as possible to help him along. I have been cancer free for almost two years now. I go Friday the 20th for another CAT scan. Mine was in my groin area on my left leg so amputation was not a possibility. I had a total of 17 lymph nodes removed. Please feel free to contact me if you have any more concerns. I had 4 surgeries,30 days of radiation, and 6 rounds of chemo in an 8 month period. So I know that this all seems so compressed. Please feel free to e-mail me anytime. Keep the faith!

Tom Lamb

lambli@...

 

From: Epithelioid_Sarcoma@yahoogroups.com [mailto:Epithelioid_Sarcoma@yahoogroups.com] On Behalf Of vagnbietjie
Sent: Saturday, November 14, 2009 4:21 AM
To: Epithelioid_Sarcoma@yahoogroups.com
Subject: [Epithelioid_Sarcoma] new member

 

 

Hi,
I have just joined the group. My son is 41 years old and has had E.S. for about a year now. He had his first surgery in July of this year, and when the path results finally came back, he started receiving all the info from our local cancer agency in Victoria, B.C. Canada. What a time it has been. We went for a second opinion in Seattle, Washington. They were so helpful! They had seen a lot of this type of sarcoma and helped us to look further afield in Canada to find a sarcoma specialist who does limb sparing surgeries. They wanted to do a fore quarter amputation, which scared us so. Rich had the initial tumor under his right axilla. Unfortunately it has already spread to his chest wall. He has just finished a 5 week course of radiation, the chemo that was suggested wasn't available to us (Ifosamide) Rich's surgery is due to take place in Calgary, Alberta in January. The tumor has wrapped around the inominate artery and veins leading to his right arm, and also some nerves. There will also be a plastic sarcoma specialist who will do the vessel grafting and nerve grafting (I had no idea they did this) As Rich is single and has never had a partner, I have come down to take care of him. He was pretty sick when I first got here, but has improved tremendously, even gained some weight. He is being investigated now for anemia and liver enzyme elevations, oh dear, as if the E.S. wasn't enough. He is very positive though and is determined to beat this.
Any communicative support would be so appreciated. I feel so scared but daren't show it!!
Take care all,
Joan


Reply | Forward | Messages in this Topic (13)
#101 From: "KathyZ" <kathy.zuber@...>
Date: Sat Nov 14, 2009 4:30 pm
Subject: Re: new member 		kathy.zuber
Online Now Online Now
Send Email Send Email
  
Hello, Joan

This is Kathy, and I'm glad you've joined.  Sorry to hear about your son.  I
know how hard it is to stay positive, but it is important.

My daughter and I both knew what her outcome was going to be, but never spoke
(to each other) about it.  I know she confided in her brother and sister-in-law
and friends, and I, of course, talked to many people, but we stayed positive to
each other.

One time I mentioned a 'living will' and she just freaked!!!  She cried and
asked me if I thought she was gonna die.  It broke my heart.  Of course I lied,
and said no.  From that day forward I never mentioned a negative word to her.

It was the hardest thing I've ever done - watch my daughter die.  We gave it the
good fight, for a solid year, after we found out she had a recurrance.

I guess what I'm trying to tell you is to be there for him, stay positive, and
fight for the best possible treatment he can get.

I don't understand what you mean by saying that Ifosamide wasn't available??? 
Stephanie had Ifosamide, along with 2 other chemo drugs.  They called it AIM. 
It consisted of Adriamycin, Ifosamide, and Mesna.

Here is an article, from PubMed, about the use of Chemo for Sarcoma:

Oncologist. 2009 Oct;14(10):1003-12. Epub 2009 Oct 6.

Should patients with high-risk soft tissue sarcoma receive adjuvant
chemotherapy?
Schuetze SM, Patel S.

University of Michigan, C342 Med Inn, SPC 5848, 1500 E Medical Center Drive, Ann
Arbor, Michigan, 48109-5848, USA. scotschu@...

Soft tissue sarcoma is a malignant connective tissue tumor that may arise
anywhere in the body and from diverse mesenchymal elements. Its incidence is
approximately 30 per million persons. The majority of patients with soft tissue
sarcoma present with potentially life-threatening disease, and complete
resection to obtain specimen margins free of tumor and radiation offer the best
chance for local disease control. The risk of relapse and death from disease
rises with increasing tumor stage, grade, and size. Adjuvant chemotherapy has
been studied as a means to decrease the risk for disease recurrence in patients
with localized soft tissue sarcoma at diagnosis, but the majority of trials
reported on have been hampered by patient heterogeneity, low patient accrual,
and short follow-up. Meta-analysis and reviews of institutional large series, in
efforts to overcome some of the limitations, suggest that doxorubicin with
ifosfamide reduces the risk for sarcoma recurrence and death in selected
patients with high-grade, large, and chemotherapy-sensitive sarcoma subtypes to
a clinically meaningful degree. In multiple analyses, patients with high-risk
soft tissue sarcoma treated with chemotherapy have a >10% absolute lower risk
for disease recurrence and longer disease-specific survival than patients
treated without chemotherapy. In the absence of conclusive results from an
adequately powered, randomized, controlled clinical trial, the available data
support the use of chemotherapy in the management of high-risk, localized, soft
tissue sarcoma.

Hang in there, be strong and positive, and remember God doesn't give you
anything you can't handle!!!

If you have any questions - just ask.  I'm sure any of the members here will be
glad to help, as will I.

If you feel scared, or just need to talk, I'm here.  My cell # is 616-706-3416.

--- In Epithelioid_Sarcoma@yahoogroups.com, "vagnbietjie" <joannuttall76@...>
wrote:
>
> Hi,
> I have just joined the group.   My son is 41 years old and has had E.S.  for
about a year now.   He had his first surgery in July of this year,  and when the
path results finally came back,  he started receiving all the info from our
local cancer agency in Victoria,  B.C.  Canada.   What a time it has been.    We
went for a second opinion in Seattle,  Washington.   They were so helpful!  
They had seen a lot of this type of sarcoma and helped us to look further afield
in Canada to find a sarcoma specialist who does limb sparing surgeries.   They
wanted to do a fore quarter amputation,  which scared us so.   Rich had the
initial tumor under his right axilla.   Unfortunately it has already spread to
his chest wall.   He has just finished a 5 week course of radiation,  the chemo
that was suggested wasn't available to us  (Ifosamide)   Rich's surgery is due
to take place in Calgary,  Alberta in January.   The tumor has wrapped around
the inominate artery and veins leading to his right arm,  and also some nerves.
There will also be a plastic sarcoma specialist who will do the vessel grafting
and nerve grafting  (I had no idea they did this)   As Rich is single and has
never had a partner,  I have come down to take care of him.   He was pretty sick
when I first got here,  but has improved tremendously,  even gained some weight.
He is being investigated now for anemia and liver enzyme elevations,  oh dear, 
as if the E.S. wasn't enough.   He is very positive though and is determined to
beat this.
> Any communicative support would be so appreciated.   I feel so scared but
daren't show it!!
> Take care all,
> Joan
>

Reply | Forward | Messages in this Topic (13)
#100 From: "vagnbietjie" <joannuttall76@...>
Date: Sat Nov 14, 2009 9:20 am
Subject: new member 		vagnbietjie
Offline Offline
Send Email Send Email
  
Hi,
I have just joined the group.   My son is 41 years old and has had E.S.  for
about a year now.   He had his first surgery in July of this year,  and when the
path results finally came back,  he started receiving all the info from our
local cancer agency in Victoria,  B.C.  Canada.   What a time it has been.    We
went for a second opinion in Seattle,  Washington.   They were so helpful!  
They had seen a lot of this type of sarcoma and helped us to look further afield
in Canada to find a sarcoma specialist who does limb sparing surgeries.   They
wanted to do a fore quarter amputation,  which scared us so.   Rich had the
initial tumor under his right axilla.   Unfortunately it has already spread to
his chest wall.   He has just finished a 5 week course of radiation,  the chemo
that was suggested wasn't available to us  (Ifosamide)   Rich's surgery is due
to take place in Calgary,  Alberta in January.   The tumor has wrapped around
the inominate artery and veins leading to his right arm,  and also some nerves.
There will also be a plastic sarcoma specialist who will do the vessel grafting
and nerve grafting  (I had no idea they did this)   As Rich is single and has
never had a partner,  I have come down to take care of him.   He was pretty sick
when I first got here,  but has improved tremendously,  even gained some weight.
He is being investigated now for anemia and liver enzyme elevations,  oh dear, 
as if the E.S. wasn't enough.   He is very positive though and is determined to
beat this.
Any communicative support would be so appreciated.   I feel so scared but
daren't show it!!
Take care all,
Joan

Reply | Forward | Messages in this Topic (13)
#99 From: Kana Yang <kana.yang@...>
Date: Wed Nov 4, 2009 2:12 am
Subject: Re: Decision to not radiate 		kana.yang
Offline Offline
Send Email Send Email
 
Hi, Tim. I appreciate all the support! I can't thank you enough for suggesting Dr. Gottschalk. It took a while to get in to see him and it was a long wait for him at UCSF, but once I had his attention, I knew he would take as much time with me as I needed, so that was incredibly generous and kind of him. We discussed somethings that I did not consider beforehand and that was really great. I told him that you had "referred" me to him and I know he rememebers who you are because he reminded me that our situations are very different from each other. In any case, Congrats on a successful surgery. That is excellent news!! I am so happy for you and I hope you are recovering well and that you continue to do well!! We will have to keep in touch! stay strong and keep on fighting!
 
Kana
 

From: Timothy Neuman <star.designer@...>
To: Epithelioid_Sarcoma@yahoogroups.com
Sent: Sat, October 31, 2009 6:28:00 PM
Subject: Re: [Epithelioid_Sarcoma] Decision to not radiate

 

Dear Kana,
 
I'm so happy to hear the great news for you, Dr. Gottschalk is a great Doctor and very up front with his patients. I just had surgery at UCSF and came out of it doing great! Its very important to have a team of Doctors that you can trust and are willing to work with you to help make the burden of dealing with ES more bearable. I so glad that I was able to help you find a Doctor that would give you the news and information that you were looking for. Its very important that we all help each other on this site with information that we have all gathered from our experiences with ES. Kana I wish you all the best with your future and my you have many years without thinking about ES.
 
My Greatest Wishes,
 
Tim

--- On Sat, 10/31/09, Kana Yang <kana.yang@yahoo. com> wrote:

From: Kana Yang <kana.yang@yahoo. com>
Subject: [Epithelioid_ Sarcoma] Decision to not radiate
To: Epithelioid_ Sarcoma@yahoogro ups.com
Date: Saturday, October 31, 2009, 2:31 PM

 
Hello, everyone. It has been awhile since I was logged in on this site. I am both happy and sad to see that we have had a couple of new members. Welcome to our group. I hope you find this site as helpful to you as it has been for me. It has been my only source of real contact and info with people living with ES. I have not found a sarcoma support group yet, and will need to do that. In the meantime, this has been a great place to vent my concerns, fears, questions, etc. Thank you all for being here.

Anyway, I wanted to share with you my decision to NOT get radiation therapy. I think some of you may  recall my dilemma wrt radiation therapy and whether I should do it. I finally got a second opinion with Dr. Gottschalk at UCSF (many thanks to Tim Neumann for sharing this contact info) yesterday. He looked at my films and notes from my dr's at Stanford and agreed with them that for my particular situation, I did not need to undergo radiation therapy at this time. I am really happy that I got that recommendation from him. I would have been more confused if he would have gone the other way. But it was nice to get someone else's opinion (outside of Stanford) on the prognosis of my ES. It was comforting to hear him weigh all the positive factors in my favor and why he believed I did not need radiation. So, that is where I am. I am so thankful and blessed to be in this position. I think I can say that I am ready to move forward with my life. I have been in this holding pattern of trying to heal from surgery and trying to decide what my next stage of treatment should be for so long that is feels great to finally say that I can return to my new "normal" now. Of course, it is never over with ES, but at least this stage is over. I know that when I go in to get my quarterly scans and see my oncologist, they will serve as grave reminders of my disease, but I have to move forward from here. So, for now, I am relieved and content with my life as it is......thank you for allowing me to share this with you. I will continue to pray for all of us as we continue out battle with ES. Best of luck and HAPPY HALLOWEEN!!

best,
Kana




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