Just heard that the PET Scan was Normal and the Radiotherapy is clearung the
Tumour on my hip. Now keep it uncovered and apply 50/50. It said that I remain
well, with a performance status of about 1.Will have to ask Alison what this
means, when I see her on Sept 14th. A reminder that the next Support Group is on
monday Sept 13 at 12.30 and the subject is ITCH!  Best Wishes  Jim

Thanks for the info Jim and glad to hear you're still coping so well..

Hi to all as well - our group is very quiet, but the US one is
similarly so....  Must be N.Hemisphere summer lethargy!  Here in
S.Africa the plants are recognising that summer is on it's way and
the indigenous plants like proteas are in full flower and looking very pretty.

Wish I could attend that support group when they talk about
itch!   Had about 30 (and I'm not exaggerating) solar keratoses
frozen off my face, arms, legs, scalp and chest and now the scabs are
starting to fall off and have added to my itchy woes...

I have asked this before, but don't recall responses...  Are your MF
plaques/patches there constantly or do they flare up on a regular
basis?  Just had one "cycle" of activity, where most of my face goes
very red, then the skin over most of my face thickens, stings
somewhat and goes scaley.  After a week or so, it seems to calm down
and disappear into wherever MF goes for another week or two or three...

Because the MF is in my eyelids, my eyes then become puffy and I look
as if I'm been binging somewhere!

Cheers
Pat

Dear Pat. Sorry to hear of all your skin cancers. The only plaque I have, is the
one on my hip, with the tumour in the middle. Most of my patches have vanished.
Just a few left side neck, but I may have 2 new ones on rught foot, and there
may be one coming on left forearm.  There are some small lumps on the back of my
neck to show Alison. Jim

--- In mycosisfungoidesint@yahoogroups.com, Pat Dreyer <pdreyer@...> wrote:
>
> Thanks for the info Jim and glad to hear you're still coping so well..
>
> Hi to all as well - our group is very quiet, but the US one is
> similarly so....  Must be N.Hemisphere summer lethargy!  Here in
> S.Africa the plants are recognising that summer is on it's way and
> the indigenous plants like proteas are in full flower and looking very pretty.
>
> Wish I could attend that support group when they talk about
> itch!   Had about 30 (and I'm not exaggerating) solar keratoses
> frozen off my face, arms, legs, scalp and chest and now the scabs are
> starting to fall off and have added to my itchy woes...
>
> I have asked this before, but don't recall responses...  Are your MF
> plaques/patches there constantly or do they flare up on a regular
> basis?  Just had one "cycle" of activity, where most of my face goes
> very red, then the skin over most of my face thickens, stings
> somewhat and goes scaley.  After a week or so, it seems to calm down
> and disappear into wherever MF goes for another week or two or three...
>
> Because the MF is in my eyelids, my eyes then become puffy and I look
> as if I'm been binging somewhere!
>
> Cheers
> Pat
>

Went to Support Group, on monday - Just 5 of us there, with 2 nurses,
Councellor, and the Pyschologist -Dr Orlowska.who took us through the broad
outlines, before we had a general discussion. Avoid Stress- Break the Habit -
Use Cold Packs - Clench and unclench fists - Snap a rubber band on hand - Keep a
diary,Allergy? - One or two other things, but I cant read my writing. I asked Dr
Orlowska if she could put some notes on our website, so we may be lucky. Next
meeting - Oct 11th. Benefits and Insurance etc. Travel on Tube was fine, but I
may miss some meetings in the bad weather.
   I went to see Alison, the next day, for Fasting Bloods.My hip seems to be
healing well, and I showed her a couple of new patches. She rang this morning to
say that my Cholesterol was still rather high, so I have promised to give up
Mars Bars. Best Wishes  Jim

Went to St.T's yesterday, for Blood Tests, and to see Alison. I have a slight
itch on my back, and she said it is a small patch, and use the Steroid Cream.
She rang me this morning, to say the Blood Results were OK, and carry on with
the tablets as before. I bought a M&S Tuna and Sweetcorn Sandwich, and ate it,
as soon as the Blood was taken - I get up about 5, and exist just on water, till
then.The place on my arm, where the SCC was, has responded to the Antibiotic.The
Hip is now OK after the Rasiotherapy.There is a small lump on my forehead, where
thetother one was frozen, but not to worry about it, unless it starts growing.
Nurse from Hospice rang, to see if I was OK, and it should reopen in 2-3 weeks.
Hope this is interesting  Jim
p.s Next Support Group -11Oct -Talk on Benefits and Insurance.

Hi All,
Just thought I would post a quick message haven't posted since last year, but I
do read Jim's updates with interest. Well since I finished my 4 months of PUVA
in July last year I have remained clear, just have a bit of itching/prickling
sometimes, and some blisters on hands and feet but no patches returned. So am
quite pleased as it returned quite quickly after my first PUVA treatment 2 years
ago.

Also have some happy news to share, you may remember we were trying for a baby
but miscarried 2 years ago, well we are now the proud parents to baby Ethan,
born 4 weeks early on the 31 July. He is doing well, and growing bigger by the
day. I am waiting to see how my skin responds to all the hormonal changes, am
hoping to stay clear so I am feeling good and can enjoy my maternity leave with
Ethan.

Anyway hope you are all doing ok, and am interested in other peoples updates.

Best Wishes
Claire

How great to have some good news from Claire.   Congratulations and yes, it will
be very interesting to see whether hormonal changes have resulted in changes to
your MF. Enjoy Ethan as I'm sure you will.  Keep in touch to let us know.

Our group is truly quiet, so hopefully it's "no news is good news."  I'm trying
to decide between two new radiation oncologists, seeing my one quit his practice
about two years ago. A male took his practice over and the other option is a
woman.  Think I'm leaning towards her as when I have to lie stark naked for four
rotations of my body, it may be a bit easier to have a woman around!

My skin is very blotchy and bumpy and the derm wants me to see an oncologist, so
I don't think I can put if off for too much longer.

I don't mind having having blotchy red arms, but it's when my face goes bright
red and then scales that making that appointment seems needed...

Guys and gals in our group - we need to kickstart some activity!  How about each
one just writing in to say a few words?

Regards to all...

This is mainly for Lew.  For those who don't know him, he does huge amounts of
research.  Some of his findings are refuted by members, but many have merit.

He was conducting a test on himself with baking soda - I really would like to
hear his summation as I am finding out so many uses for this ordinary substance,
from treating spider bites to removing stains.

What news, Lew?

Wow!  What a document.  I would recommend that each one downloads it and goes
through it.  Some of the "medicalese" is over my head, but most of it is
understandable and gives much greater insight into what has been happening on
the medical and research front for our disease.

Judy - is this being distributed to South African dermatologists?

Congratulations for the role you played in the publishing of this document.

Hi

I will send an email to my derm, asking if there is a society or list
so that this can be circulated.  How would you best describe it?  The
name to me initially sounded more like minutes of a meeting and
doesn't show the wealth of info and research findings, plus all the
treatment options.

I'll wait to hear from you before sending...


At 03:18 PM 2010/10/04, you wrote:
>
>
>Pat,
>
>I'm not sure if we have any South African derms on our mailing
>list.  This is something that all of you can help us with.  Ask your
>doctors if they have seen this document.  If not, they can access it
>on our website.  They can also join our physician e-blast mailing
>list.  This goes out about once a month and gives them information
>about meetings and educational opportunities in the cutaneous lymphoma field.
>
>

Cheers
Pat

Sorry folks.... I didn't scroll down to see that this reply was going to the
group and not privately to Judy...

Anyway, at least I didn't malign anyone!

What did you, the members, feel about this document?

Hi all. It has been several years since I've connected with the group. Hope all
are well. Is anybody currently in the low-dosage, full-body radiation clinical
trial now going on at Stanford?  I was hoping to join the trial but my insurance
won't cover it at the moment.

Regads, Phil Braverman, Folsom, CA

Hi Phil - good to hear from you.

We don't have such luxuries as clinical trials in my country as there are so few
of us!

But I have had full body low dosage radiation.  Was put into four different
positions or poses (lead eyeshields like contact lenses), then had 8 1/2 min
radiation per position.  The course was once a week for 6 weeks, but my skin
became too painful for the last one.   BUT - once recovered, my skin looked
great, so it really was the best treatment for me.   I'm very likely going to be
repeating this in the near future.

Pat,
Sorry to hear about all your flare ups. I responded a while back about the
baking soda and that I had no ill affects from placing a little in my coffee. I
did not notice any great improvements in my skin from such procedure and might
try it again in the future. As far as researching new information.. things
appear to be changing very quickly on the world wide web. A great deal of
control is now being place on any and all information posted. As well censorship
of speech is also under attack world wide via utilization of spam captcha
programs that will direct the erasure of information and or users posted
comments on sites. So I am not sure if there would be any way to find the real
truth in any future medical research or from others discussing any new research
because of these newly implemented information control mechanisms here in the
USA. If I do find out anything new I will let you know.

Take care

--- In mycosisfungoidesint@yahoogroups.com, "PatD" <pdreyer@...> wrote:
>
> This is mainly for Lew.  For those who don't know him, he does huge amounts of
research.  Some of his findings are refuted by members, but many have merit.
>
> He was conducting a test on himself with baking soda - I really would like to
hear his summation as I am finding out so many uses for this ordinary substance,
from treating spider bites to removing stains.
>
> What news, Lew?
>

Thanks,Pat. The course of treatment in the trial is 4x week for 3 weeks. There
are 30 or so people in the study now and I was hoping one ofthis group would be
a participant--so I could talk to them. Sounds like you had good results.
Stanford is telling me it can clear a person up for a couple of years.

Phil


--- In mycosisfungoidesint@yahoogroups.com, "PatD" <pdreyer@...> wrote:
>
> Hi Phil - good to hear from you.
>
> We don't have such luxuries as clinical trials in my country as there are so
few of us!
>
> But I have had full body low dosage radiation.  Was put into four different
positions or poses (lead eyeshields like contact lenses), then had 8 1/2 min
radiation per position.  The course was once a week for 6 weeks, but my skin
became too painful for the last one.   BUT - once recovered, my skin looked
great, so it really was the best treatment for me.   I'm very likely going to be
repeating this in the near future.
>

Hi Phil (and any other interested persons - AOIP)

I was never 100% clear because I couldn't tolerate all 6 sessions,
but the improvement was hugely impressive.  My skin stayed in this
good condition for more than two years, then bad stress caused by the
traumatic death of my brother started it all off again...  But still
- he died 2 1/2 years ago, so it's taken a long time to really come back.

Both my derm and the radiation oncologist have disappeared from "my
scene" and so I contacted the radiographer who was in charge of
administering the radiation at the teaching hospital where I was
before.   She has spoken to their consultant radiation oncologist who
is going to contact me.  They are holding a lymphoma workshop next
week and she has indicated to the radiographer that it may be a good
thing to attend.   Waiting to hear.... Oh dear - could be another
session of sitting around in my underwear, trying to hold my stomach
in as more than a dozen docs come and study my skin!

Cheers
Pat

Hi all. Has anyone been treated with Nitrogen Mustard (mustardine)? I am about
to begin a course of treatments with the drug in Ointment form.
Thank you,

Phil Braverman, Folsom, California

 

Hi all. Has anyone been treated with Nitrogen Mustard (mustardine)? I am about to begin a course of treatments with the drug in Ointment form.
Thank you,

Phil Braverman, Folsom, California

Thanks for the response.  Interesting that you say there is greater control on
web information - I don't know what spam captcha means.

Pity about baking soda not really helping as it's such an amazing all-round home
remedy for a host of problems.

Your post didn't reach my in box, so it was only seen when I had a membership
application and had to go into the website.  By the way - this application was
refused as the address consisted of letters of the alphabet and the reason for
wanting to join was "xmvnvbbfsdgffhfj@...> Comment from user:
proceed some talking and meet women."  Don't think this is a genuine MF person!!

Hi - an article in the Daily Mail re cancer quotes Alison Boyd - is this the
same person?  The article refers more to other types of cancer, but still makes
interesting reading:

http://www.dailymail.co.uk/health/article-1319174/Cancer-A-Macmillan-nurse-answe\
rs-questions-youre-embarrassed-ask.html

I saw my CNS Alison Baker, yesterday, and had Blood taken. She phoned me, this
morning, to say The Cholesterol is still high, and They are altering the
tablets, I take, and I am also to have Omega3, and attend a Lipids Clinic.I have
a very healthy diet, so may have to give up the little piece of Cadbury Milk
Chocolate, I have each day, as a comfort food. Jim

--- In mycosisfungoidesint@yahoogroups.com, Evangelos Louizos <louizosev1@...>
wrote:
>
> That's not our Alison at St Thomas's, I don't think. She is a specialist skin
> lymphoma nurse. I read the article but it doesn't mention skin lymphomas, in
> fact for all the health related articles in the press over the years I've
never
> seen anything about them. Maybe someone in the group should submit an article
to
> raise awareness? I thought I was quite well informed on medical matters but
when
> I was diagnosed with MF, part of the shock was that I had no idea these
> conditions existed.
>
> Vivien
>
>
>
>
> ________________________________
> From: PatD <pdreyer@...>
> To: mycosisfungoidesint@yahoogroups.com
> Sent: Tue, 12 October, 2010 9:41:38
> Subject: [mycosisfungoidesint] Is this the Alison Jim talks about?
>
>  
> Hi - an article in the Daily Mail re cancer quotes Alison Boyd - is this the
> same person? The article refers more to other types of cancer, but still makes
> interesting reading:
>
>
http://www.dailymail.co.uk/health/article-1319174/Cancer-A-Macmillan-nurse-answe\
rs-questions-youre-embarrassed-ask.html
>