We Talk Brain Tumours

IDOF - I'm so very sorry to read about your mum's passing. I've identified a lot with you over recent months and my heart goes out to you. Sending you love and cyber cuddles. Keep going.xxxx

Thank you to all of you who replied about the MRI and radiation business. Funnily enough, the MacMillan nurse told mum today that she should demand a scan when dad next sees the oncologist in two weeks' time. My fear all along has been that they won't re-scan him as he's terminal so they might have a "what's the point" attitude OR even that it may have grown significantly so could prove detrimental to his ability to fight on. I don't know. The Mac nurse has offered to speak directly to dad's consultant on our behalf.

PEABS - this stage of the illness is indeed horrific and I'm not prepared for it, despite the hours of reading I've done on GBM. I keep thinking "a month ago dad could do this/dad could do that" etc. In December they parked at my house to walk the 15 minute journey to the hospital for his Radio, now he can barely get out of a chair and sleeps 20+ hours a day. I hate what I'm becoming - I'm bitter and resentful and feeling sorry for myself when my energies should be going towards helping dad.

Anyway, I'm digressing. Thank you also for the information about the seizure medication. All very informative.

Love to all and keep going.xx

Dear IDOF

Not spoken to you before but I just wanted to say how sorry I am to hear about your mum and it is very brave of you to come on this site again. I just read your story and it sound all too familiar with our own.

Dear Deli

Thanks for link but not brave enough to look today. x

Opal

dear IDOF, The days ahead will be hard honey.Take one day at a time....There is no right ir wrong way to grieve..just your way. So many of us know this new part of your journey and we are still here if you need us.

I'm so sorry to hear of your mum passing away.

With love PEABS XXXXXX

Debs absolutely wonderful news I'm so very happy for you,  long may it continue. xxx

Sorry if I've done this wrong but wasn't sure how to join this thread.For a few months now I have been following all the conversations going on this thread but haven’t felt brave enough to open up and express myself in words. For all these months I have kept going and going, hoping against all odds that my husband would be maybe one of the lucky ones to, if not beat this dreadful illness, but maybe win a little more time, if not for me, then for our boys. Unfortunately, looks like once again, this monster of a tumour is going to consume a fresh victim.

Our nightmare began in April 2010. We had just returned from our first holiday as a couple in 16 years. Our boys had gone skiing with school and we took the opportunity to escape ourselves. We had only been back a week when he came home from work, poured us each a glass of wine, looked at me, asked me not to panic as he felt a bit “strange” then went into convulsions. Three weeks of tests, scans and a brain biopsy later, we were told the grim news that at age 45 years, my husband, my soul, my anchor had inoperable GBM 4. We were devastated and so began our journey.

After months of the standard “gold” treatment of radio/TMZ followed by 6 months of TMZ, in January 2011 after MRI scan, we were told that my husband’s tumour is now Progressive GBM4. In other words, the treatment hadn’t stopped the tumour growing. We were sent home with literature explaining treatment with PCV, although I begged the consultant to apply for funding from the PCT for Avastin or for him to be included in any trials that were being conducted at any of the major teaching hospitals. I was promised that all avenues would be explored. In the meantime we were given an appt to return in 2 weeks after we had a chance to consider PCV.

Monday 14 February, in the early hours of the morning, my husband suffered an intracranial bleed. He has now almost totally lost his speech on top of his other tumour induced effects of loss of right sided vision and right sided weakness. His tumour is in the left occipital lobe.

Where do we go from here? I’m not ready to let him go. Is there anyone here whose journey has been similar and has been offered hope of maybe Avastin or any other trial treatments for progressive GBM4?

Please, all advice would be most welcome.

Beedarsh

Hi Beedarsh,

I'm so sorry to hear of your situation, it sounds like you are going through absolute hell at the moment. Hopefully your appointment with the consultant in a couple of weeks will bear fruit, and give you other options to try.

My dad is currently on a trial for Avastin, specifically to see if it can help patients who have had their initial tumour surgically removed. When his consultant asked him if he wanted to take part in the trial, she explained Avastin is not the be all and end all of brain tumour drugs, and that if he didn't want to do the trial, he shouldn't think he would be missing out on anything major. Some people have even voiced concern at Avastin's effects on brain tumours, saying it somehow 'masks' progression. So I don't know what to think, but my dad is continuing with the trial, which officially lasts 17 months, though he can stop at any time if he wants to.

Another option I have in the back of my mind for if, or when, my dad's tumour becomes resistant to the chemo drugs he's offered on the NHS, is to get hold of the DCA drug from Canada's Medicor healthcare centre. They are doing their own research on it and seem to be seeing decent results on patients who have exhausted other options. It is a slightly controversial drug because it hasn't been officially trialled, though it has been used for years on patients with other health conditions for years.

I think cost-wise it's around £250 a month, and the patient takes it for two weeks of each month. I've been reading the following web pages and think it might be worth a try, however I know dad's consultant will probably not support our decision to do so. Obviously there are no guarantees it will work for everyone, but to me, anything is worth trying.

http://www.medicorcancer.com/DownloadForms/DCA-FAQs_form-Medicor.pdf

http://www.medicorcancer.com/news.html

Wishing you and your hubby the very best - let us know how your appointment goes. Will keep my fingers crossed for you both.

Debbie xxx

Dear Beedash

My heart goes out to you when I read your post. Are you still going for the PCV treatment?

Clinical trials only offer a very small hope and you may not even be given the drug as part of the trial but where there is hope...

Opal

Hi Beedarsh

Sorry you have also joined us, to find a clinical trial go to http://www.clinicaltrials.gov/ there are no guarantees that your husband would be suitale but you can look at the studies where they are running and the inclusion/exclusion criteria, then discuss the nearest centres with your consultant. 

My husband is not suitable for clinical trials as he was diagnosed with a sub ungal melanoma the month after his GBM, so two unrelated cancers in two months = exclusion to all studies.

take care

Joanna

Hi all

My mum has just been disgnosed with a braintumour  and kidney cancer on the 10th Feb, we have been told week maybe 2 left with her! all in the space of 8 days, she has deteriated considerably as she has a tumour with growths forming and poss another on the other side of her brain, she had nothing 6 months ago so this has grown recently and very aggressively, not sure how we are going to cope without her she is my best friend we live near each other and see each other every day and do everything together.

I would appreciate it if I can join this site once up and running again and I am sorry to hear everyone elses sad situation too xxxx