Glioblastoma Why Why Why <br/>

FormerMember over 16 years ago

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Glioblastoma

My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.

FormerMember over 16 years ago

Hi again Jeanyb,
My wife has a grade 3, maybe with some 2 there as well, astrocytoma in her left temporal.
She was diagnosed and debaulked in January 2003 and the prognosis was up to 2 years!
She had the radiotherapy x 30, but no chemotherapy.
She is still quite well and continuing to keep me on a tight rein!
I will try and answer any questions you have, if you would sooner private message, then request me as a friend.
Martyn XX

FormerMember over 16 years ago

Martyn

You wish Doreen kept you on a tight reign! Your toes maybe yes but a tight reign never!

FormerMember over 16 years ago

Hi Izzy

Glad you are getting some help and good advice from everyone xxx

Barbara hope you are feeling ok thinking about you and the girls xxx

Martin hope Doreen is feeling a bit better xxx

love gayle xxx

FormerMember over 16 years ago

Can anyone help? My Dad was diagnosed with Grade 4 Glioblastoma Multiforme in January 2008. He received 6 weeks radiotherapy and temodal treatment and was then put on a 6 cycle course (5 days chemo, 23 days off). He has just started his 5th cycle and so only has one more to go. He is doing fantastically well - his speech isn't great but he copes and so do we. He looks well, says he feels well and for the most part he's living his life e.g. he's still making things in the garage, catching the bus up to town. My huge worry is what will happen after the 6th cycle. We have been told he will have an MRI but basically it will then be a waiting game and they will reconsider what to do once other symptoms start to appear. This doesn't make sense to me - why can't he stay on the courses of Temodal? The doctors say his liver and kidneys need a rest but his blood results have always been excellent. They say this is the standard treatment.
I have read an article 'State-of-the-art Therapy for Glioblastoma Multiforme'by Henry Friedman who says 'Patients are treated routinely...with surgery followed by radiation and temozolomide, followed by temozolomide with virtually no hope of long-term survival. It is absolutely ludicrous to believe that any malignancy, particularly one as aggressive as GBM, can be cured with single-agent chemotherapy.' He advocates that patients not on clinical trials can be treated with other agents e.g. the use of Bevacizumab which studues have shown that in combination with Irinotecan has had an extraordinary response rate and duration of response. He says 'Patients with GBM are not universally incurable with an ever-increasing, albeit small, fraction of patients who appear to survive the disease' and that 'for patients for whom GBM is not a terminal event...reliance on a single agent, whether temozolomide or anything else is nihilistic, inappropriate and clearly going to be unsuccessful.' Makes you think.
Has anyone continued Temodal/Temozolomide beyond the 6 cycles?
Thank you all.

FormerMember over 16 years ago

Hello B+ve,

I'm curious what other replies you get but for what it's worth here are my thoughts. I do tend to go on a bit so apologies in advance!

I found stopping treatment after the usual six rounds unbelievable and very difficult to deal with and quizzed the neurologist and oncologists for something more. B, on the other hand, was happy at the end of treatment because even the standard treatment is quite an assault on the body.

Now, 6 months after finishing the treatment he is feeling stronger and well and we do most things we ever did.

I've read about patients having a year or more of tmz five days a month, often in the US but I'm not sure what success. I'd guess a lot depends on how much a person can stand as it doesn't just attack the tumour of course but all systems. I've never found any trials comparing 12 months on tmz to 6 months.

I have, like I suspect many of us on these threads, trawled through the internet to find success stories, other regimes. When my husband was diagnosed, the surgeon told us that there are long term survivors but they are very rare.

I think the present 'gold standard' of surgery, radiotherapy, Temodal is the best proven treatment available that, in some situations, gives added survival with quality of life when all goes well. I think that many centers will treat with less well proven drugs if or when recurrence happens.

In what I have read one theme comes up again and again that there are probably several sub types within GBM that respond to different treatments. This makes total sense to me because I think something like 50% of BT's are GBM so it seems logical to me that differences will be hidden in that 50%.

I also think that as a 'rare' cancer, brain tumours probably don't attract as much funding as other cancers but are a dreaded diagnosis so publicizing even small breakthroughs can help researchers get funding. But to me it can seem that the headlines I read about 'breakthoughs' can be disappointing when later in the article it says that more studies have shown that ... but full clinical trials are needed to investigate further.

But as long as there are studies and trials then there will be more treatments and then a cure.

Well I warned you I ramble on! Actually I probably shouldn't have answered you anyway as B did the normal 6 months.

FormerMember over 16 years ago

Hi Crazy Horse

Thank you for your response - I really appreciate it. It's reassuring to hear that B has responded well to treatment and that 6 months after finishing he is doing well.
I think I am in a bit of a panic about my Dad coming to the end of his treatment. I must have only stopped crying every day about a couple of months ago and now I'm starting all over again because this 6 months of treatment has gone so quickly and there seems to be little else on offer.
My Dad will do whatever the doctors say - he doesn't question anything but I'm always checking to see if there's more. Dr Friedman in the US seems to be at the forefront of research and treatment (I wish I could talk to him!) but it is such a fight to try to find information.
When I read the info on taking tmz initially it clearly stated that it should be taken 1 hour before radiotherapy. We brought this up in Dad's consultation but the drs said it didn't matter - just to take it at the same time every day. But it really might matter - the manufacturers wouldn't have said that it was important for optimum success otherwise - so we made Dad take it 1 hour before radiotherapy. We also had to insist on him starting his 1st cycle following a 4 week break - they said he would be offered cycles but they would write and let us know when. That wasn't good enough.
These small issues are so important - which makes me feel that in some way it's up to us to find out because if you don't ask, or insisit, they won't tell you.
As you can see, I go on a bit too!

Best wishes

FormerMember over 16 years ago

Hi B+ve,

I'm glad you posted your original post because it also got me looking again at research. Only just now I have made a list of questions about other therapies for the neurologist when we next see her. Here in Holland there has been quite a lot in journals about virus treatment - actually using a strain similar to rabies that has had some good result in early trials.

Though if you root about in research like I do - well, let's say I try to, because I really can't understand the technical papers, I just read the introductions and conclusions, you'll see there is also a lot (though NOT ENOUGH I want to shout) of research going on in Europe too, but what works seems to be so often related to specific chemicals secreted by the tumours in many cases.

Sometimes looking at research makes me crazy and I want to rush to the hospital and have it all for B. A lot are hopeful but just in the trial phases. You also have to live for the day but getting the balance, especially when treatment seems to have stopped is b. hard.

You though are absolutely right to stick as close as you can to the instructions on the packet. I was astounded by what your doctors said. If they say that I can imagine that you question if they are doing enough. Having faith in your doctors is quite important I think. One was really getting on our wick so we changed to see another one.

I think I've read that having tmz in the system can make the radiotherapy hit the cells harder. I used to get very agitated when the radiotherapy machines broke down and we had to wait for another one but that was about 4 times in 42 so to a small extent I had to learn to chill out - well pretend I'd learnt anyway ;)

There were also quite strict rules here about not eating for 1-2 hours before taking it whichB stuck to.

I had to ask about 10 different people if B should have an anti-flu jab last year, I'd read that in England they do give it to chemo patients (?) but in Holland, at least in this case the oncologist wouldn't allow it at all.

So carry on pushing ** B+ve. If you also read the thread: We Talk Brain Tumours you'll find so many very knowledgeable people who are supportive and have also learned the gentle art of kick-ass.

FormerMember over 16 years ago

Hi B+ve & CH

Just back from the hospital my husband had review today, he is going to be starting his 6months of temodal after completing 6 weeks radio and chemo, like your father and husband he is phsically very well very strong lots of energy he looks so well his memory not quite as good, his personality changed for a while but he seems to be slowly getting back to himself thank god.
I asked the question also what happens after the 6 month cycle and we were told nothing until it starts to regrow, why if my hubby is still well would you not continue as they do in America, and stop the tumour from regrowing. Is it because this country does not have the funding? What do you guys think.

love Gayle xxx

FormerMember over 16 years ago

Hi Gayle, I'm very glad to hear that Martin is doing so well. B (and I ) have memory problems but that may well be because we are both 50 :)

I'm not a medical person , well, anymore than we are all who come to know this illness.

I scrabble about on the internet to find studies, results, hope really.

My opinion for what it's worth is that there is a lot of hype about new treatments before they have been proved (maybe especially in the US). I have not found a standard US treatment. Maybe because of the state system there isn't one?

There is a standard treatment in Holland, it's the same as the standard UK treatment. You get it wherever you live here - if you can stand it. We live near one of the regional 'centers of excellence' but there is a more famous cancer hospital in Amsterdam and speaking to my own GP he told me that everyone gets the standard treatment but if later, you want to know you have tried everything you can ask the Amsterdam hospital for a second opinion.

In our case so far, B is doing well. I hardly dare write that and I am so thankful I can't express it - well you know how I feel I'm sure. So I don't know if I should try to push for experimental treatments that might make him feel less well now but might help in the long run or just be thankful that he is doing well now. Because of the people we are, I think we are doing the latter.

I don't believe that there are better treatments out there that are clinically proven that European hospitals in general won't pay for. (Am I am someone who readily believes in conspiracy theories!) I don't know, maybe I'm being too trusting here - and I was livid when I read that NICE/some health authorities didn't pay for tmz as first line treatment at first. But happily, I think that sort of info gets known because it is available on the internet.

Whereas I can't find any data about longer term survival being clinically proven using tmz for longer. Has anyone found that ?

Also there are a lot of trials still ongoing with drugs such as Avastin and many others but in the results so far I can't find anything certain, nothing clinically proven. What I read time and again is that some trials work with some people, others with others so. But I also see research reviews trying to figure out why some people just do better than others and there are many reasons but I think age and Karnofsky performance scale scores always come up as important.

My totally non-medical, actually totally laywoman's conclusion is, as I said earlier that I think they will identify subsets of gbm that can be identified and more precisely treated. But I think at the moment the standard treatment is the best that is known for initial treatment. With recurrence, I would be happier to get more experimental.

Temodal is quite a new drug I think. About 10 years ago there was just operations and radiotherapy but it's not a wonder drug. It just pushes the margins back.

I don't know if this makes any sense. It's more or less how I feel about treatment options. I hope I'm not being naive.

FormerMember over 16 years ago

hi CH, B+ve and Gayle

glad to hear martin is doing well gayle, you deserve some quality time.

on the topic of research, my understanding is the same as yours CH, and I spent many hours trawling the internet esp at the start of all this. the extended TMZ treatment is I think offered to some people but is not usual and must depend on the doctors preference - but you are right in saying there is no evidence for it being any better than just the six months - I don't know if this is becuase it has never been studied in a proper trial. the six month cycles are given because of the swiss trial in 2005 whihc showed benefit of the six weeks tmz plus Rt folowed by the 6 cycles of tmz in extending average survival by 2 months and proportionally longer for those who survived more than 2 years.- but I don't know how they chose 6 months. My husband had to stop the TMZ after 2 cycles and we were told that no-one really knew what extra benefit the 6 month cycles gave as it had never been directly compared to the tmz/ radio combination alone, but htey follow the standard treatment because that is the way the trial was set up.
re the avastin etc that they give in america, the trials they quote have only very small numbers of patients. In general in america they seem to have a different approach which is more "aggressive" than here, where there is more emphasis on quality of life issues. where a diagnosis is terminal I think that is important. at dukes uni where Dr Friedmann is they routinely offer GBM patients thier vaccine trial which looks promising but is not a cure. It is possible to go on this from overseas but you have to think carefully about the possible costs not just financially but emotionally if you travel far away from home and things go wrong, as they only pay for any trial related costs. you have to be within 20 days of the end of RT to go on the trial. You can contact duke's uni by email if you google for their website. we did think of this at one time but my hubby was too unwell to go, and we have 3 kids to consider too. I asked our doc if he had ever had a patient go to america and the answer was no! It is just too much of a challenge in the end I htink. You should certainly ask your consultant if there are any trials where you are but from what i can find out the trials in uk are mostly of drugs for recurrence of tumour.
take care
diane

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