From: Heather Linncoln <dmha93@...>
Subject: Re: [nzbraintumour] Re: Further debulking - for Heather
To: nzbraintumour@yahoogroups.com
Received: Thursday, 14 May, 2009, 9:45 AM

Hi Liz,

 

Dennis op was supposed to be tomorrow, but an emergency has come in and now we are told it will be next Thursday. The hospital have promised us there will not be any further delays.

 

We have just seen the latest MRI scan and I am sure the tumour is bigger then last time! I have noticed a deterioration in Dennis in the last few days, he is moving more slowly and he is responding to conversations more slowly as well, and memory is bad!

 

I have decided to start my leave this weekend as I do not want him to be on is own, until he is re admitted to hospital (AKL City). I want to quit work to become his full time carer, and will be trying to get help from WINS!!

The surgeons are happy to perform a second debulking, which apparently is rare, because he is still quite fit.

 

One of the biggest frustrations we have, is trying to tell his family how bad the situation is, but the response is "there is always medical breakthroughs out there"

 

I will be keeping a very close eye on any change in symptoms.

 

Love

Heather

 

PS. Has anyone had a Glidal wafer, because I have googled info, but his specialist doesn't really seem interested in talking about it?

 

 

---

From: "methompson@ xtra.co.nz" <methompson@xtra. co.nz>
To: nzbraintumour@ yahoogroups. com
Sent: Thursday, 14 May, 2009 12:20:30 AM
Subject: [nzbraintumour] Re: Further debulking - for Heather

Hi Heather

 

Mark has had two surgeries for debulking/biopsies. The first was in November 1994, and the 2nd was in July 2005, so he had had  11 years of reasonable health in-between. Keeping as fit as possible is quite important, but as you say, not always possible. But what is more important is after the procedure, not to expect a rapid recovery - recovery will take place, but patience is very important!!! . Mark did expect to recover quickly and it didn't happen...and we had our teenagers with us in Auckland and were pretty keen to get home to Gisborne. He had a few days in the ward - was fairly wobbly on his legs at first, then we had one night all together in the motel at Domain Lodge (after he had had a CT scan to check everything was ok post-operatively) .  Mark seemed fine until when the taxi was outside about to take us to the airport, he then started feeling very unwell - terribly headachy. At that point we should have cancelled our flights and phoned the hospital. We didn't and continued home on the one hour flight. Mark was fairly messed up by the time we got home...and his recovery seemed quite set-back by this. Several months later, a scan showed he had had a haemorrhage! Obviously we had pushed things along too much...and we will know next time not to continue with our plans if things aren't going well. Im sure you will be more sensible than we were, and everything will be fine with Dennis's op.

Whereabouts are you?

Please let us know when the operation is...and we will be thinking of you.

 

Much love

 

Liz and Mark

 

PS Thank you so much Chris and Susan - looks like we have not had very good information  and we will be following this up tomorrow.

 

----- Original Message -----

From: nzbraintumour@ yahoogroups. com

To: nzbraintumour@ yahoogroups. com

Sent: Tuesday, May 12, 2009 10:05 PM

Subject: [nzbraintumour] Digest Number 504

NZ Brain Tumour Support

Messages In This Digest (1 Message)

1a.

Re: Mothers Day and PETs From: Heather Linncoln

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Message

1a.

Re: Mothers Day and PETs

Posted by: "Heather Linncoln" dmha93@yahoo. co.nz   dmha93

Mon May 11, 2009 3:25 am (PDT)

Hi liz,

My husband is due to see his Neurosurgeon this week to discuss a 2nd debulking. He had his first surgery last June and then had Radiotherapy and Temodal. It looks like the tumour has come back within 12 weeks despite
Dennis being on Temodal for the last six months. I thought this was supposed to be a great drug?!

He is now back on 12mg of Dexamethazone and the Neuro registrars are telling us this surgery will only buy him more time.

Can any one give us any advise on second debulking? Dennis was so physically fit before the last surgery he bounced back really quickly, but after nearly a year of all the drugs and the physical & mental changes I have seen, I am feeling very anxious.

Heather & Dennis

____________ _________ _________ __
From: "methompson@xtra. co.nz" <methompson@xtra. co.nz>
To: nzbraintumour@ yahoogroups. com
Sent: Monday, 11 May, 2009 2:46:29 AM
Subject: [nzbraintumour] Mothers Day and PETs

Hi Everyone
 
Thanks Linda for the nice Mothers Day wishes. Its great that Bruce had a good time in Australia, and that all went well with his trip.
 
Mark managed to run the Rotorua Marathon last weekend (his 3rd one in 3 years).in spite of the fact his tumour is still growing!!! But his main problem was that he had serious problems with the iliotibial ligament in his thigh from about 4 weeks before the marathon. It was extremely painful for him to train in the last 4 weeks, so he only had physio - which didnt help with the ligament much at all... then his knees seemed to pack up...so he probably shouldn't have tried to run the marathon at all - Nevertheless he did - although he had to walk for 26 km of it with very painful legs - St Johns, his wife (me!) and other helpful people wanted to pull him off the course - but he didn't want to stop - so finally completed it in 6.45 hours !!! Still he beat 26 people - including some his own age or younger!!! And, amazingly, he could still walk afterwards and isn't crippled for life...in fact this week his injuries have finally started to get better - and he
was able to actually go for a short run yesterday!!! He got a nice finishers medal and T-shirt - so hes very proud of himself!!!
 
Since Marks tumour seems to be still growing, according to the MRI scan, in spite of 3 rounds of CCNU (November, Dec, and Jan) and two rounds of Temodal (Feb and March), it is all getting quite difficult now. He is taking 4mg Dexamethasone, as well as 3 different anti-epileptics. Lamotrigine is the new one that seems to be doing the best job, so now we are able to reduce the Epilim and Dilantin. The plan is to try Carboplatin chemo from next week. The oncologists think the tumour has become chemo-resistant, so there is only a slim chance that Carboplatin will work. But there seem to be no other options in NZ. The neurosurgeon (Muthu from Waikato) has proposed the possibility of  doing  some helpful debulking with "Awake" surgery if we would like to try that later in the year.
 
Meantime the other recommendation we have had from a locum American radiologist (who read Mark's last MRI scan here in Gisborne) is that Mark should really have a PET scan to make sure it is tumour regrowth not scar tissue. The oncologist says there is no possibility of PETs in NZ using isotopes that actually penetrate the brain. Wakefield Hospital in Wellington only have glucose isotopes which are no good for reaching brain tumours - so that is the end of that discussion. Besides, since Marks surgery and radiotherapy was over 14 years ago, scar tissue shouldn't be growing now. However we wonder whether it could be scar tissue from 3 years ago when he had his last biopsy/debulking? The neurosurgeon isn't interested in PETs either, he would just like to do surgery to see whats there.
 
We will keep you updated, but would really appreciate any comments/advice,
 
Mark and Liz

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