Hello, new to this forum

Hello all! I am joining this forum because, during my many late-night searchings for information about GBM, long term survivors, nutrition tips etc  - messages on  this  site and in this  group kept coming up in the search results! I am pleased to see people sharing information here about trials, diet, vaccines, and well.....hope! You will all understand why this is so important to me when I tell you that my husband, just 51, was diagnosed with GBM4 in early November, He had surgery mid-November, and is now about 10 days into the Temodar/radiotherapy treatment. This will be followed by a month off then the 5/23 cycle of higher dose Temodar. I've read so many things to keep me going  - Dr David Servan-Schreiber (Anti-Cancer - a new way of life); Ben Williams; and many more. However --- in spite of being busy with hospital appointments etc, things still seem unreal, painful, and wanting to turn the clock back ...but knowing that I cannot.  I've joined the Macmillan forum (I'm in the UK) and feel somehow drawn to it, yet upsetting as well, as one or two of you on here seem to say as well.

So - good wishes to you all, stay strong, and thank you for reading!

Greetings and happy (sad) you are here. You will learn a great deal and can ask any question. Was your husband's tumor MGMT positive or negative?

Hi there, welcom to a group no one should be a part of...:( Did you look for any clinical trials? Since your hubby has started radiation + Temador, most would be closed. The CDX-110 for newly diagnosed would be open if your hubby tests positive for EGFRVIII. he has to enroll prior to te adjuvant Temador. Good luck, Ravi

On Jan 23, 2013 12:45 AM future2020 wrote:

Greetings and happy (sad) you are here. You will learn a great deal and can ask any question. Was your husband's tumor MGMT positive or negative?

MGMT has only been mentioned 'in passing' by the surgeon and I got the impression that whatever the result was, the same treatment would be offered. My husand told the oncologist he did not wish to know her 'prognosis', she was happy to respect that - and my understanding is the presence/lack of MGMT (sorry not sure which!) would mean Temodal more/less likely to work! So because of wish to remain as positive and hopeful ad possible at this stage, I don't know how helpful the MGMT analysis would be - unless I've misunderstood?

On Jan 23, 2013 10:59 AM ravirajagopalan wrote:

Hi there, welcom to a group no one should be a part of...:( Did you look for any clinical trials? Since your hubby has started radiation + Temador, most would be closed. The CDX-110 for newly diagnosed would be open if your hubby tests positive for EGFRVIII. he has to enroll prior to te adjuvant Temador. Good luck, Ravi

We asked the oncologist about clinical trials and she said nothing going on at our hospital at present.  I mentioned Avastin - she said that latest survey results showed it increased progression-free survival but not overall survival and that if we wanted it, it would not be available on the NHS. So my feeling is that if there is something we want to try we will have to go looking for it!

Sorry  - don't know what EGFRVIII is. If you have a link  with info, that would great - my guess is that CDX-110 is a vaccine?

Thanks all for replies so far.

I also was 51 when I was diagnosed with my GB IV, emotionally terrible on the first months, but still here and ready for my 54 and many more and a fair life quality...

On Jan 23, 2013 1:48 PM tessa-b wrote:

On Jan 23, 2013 10:59 AM ravirajagopalan wrote:

Hi there, welcom to a group no one should be a part of...:( Did you look for any clinical trials? Since your hubby has started radiation + Temador, most would be closed. The CDX-110 for newly diagnosed would be open if your hubby tests positive for EGFRVIII. he has to enroll prior to te adjuvant Temador. Good luck, Ravi

We asked the oncologist about clinical trials and she said nothing going on at our hospital at present.  I mentioned Avastin - she said that latest survey results showed it increased progression-free survival but not overall survival and that if we wanted it, it would not be available on the NHS. So my feeling is that if there is something we want to try we will have to go looking for it!

Sorry  - don't know what EGFRVIII is. If you have a link  with info, that would great - my guess is that CDX-110 is a vaccine?

Thanks all for replies so far.

Avastin is generally for recurrences and when Temodal stops working. Re Avastin in the NHS, it seems to be a postcode lottery as to whether a Primary Care Trust will fund it. If it comes to when you need it, and your PCT won't fund it - start fighting.

hi tessa

and welcome to a great site - it's good to see more and more uk patients and their families and carers finding this forum which is full of information support and comfort

hoping your husband does well with what appears to be the 'gold standard' treatment .......

regarding methylated/methylating tumours - how important is it to have this info and do doctors/consultants in the uk always know and pass on which category you're in? 

thanks

carla (sister has gbm 4)

 

Hi there, here is a link to the clinical trial for CDX-110. The hosptials involved are listed as are the inclusion and exclusion criteria. The sponsor's lab will test tumor to determine EGFRVIII expression. Need to enrol prior to adjuvunct temador.

 

Good luck,

Ravi

 

http://clinicaltrials.gov/ct2/show/NCT01480479?term=cdx-110&

Hi Carla, Sorry to hear. i am also in the UK and my Dad was diagnosed with Glioblastoma IV in December. Ravi- I looked at this trial, I can't see that it is available for UK patients? I would be keen to get my Dad on a phase 3 trial in the UK. He starts radiotherapy and chemo in 2 weeks. Good luck Gemma