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Thread: 47 Years Old Glioblastoma grade 4

  1. #111
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    40 months survival is pretty impressive with GBM. I'm glad they were able to do the cyberknife, but it's too bad that it caused him some aphasia.

  2. #112
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    Hi everyone.

    My dad kept me out of his situation but apparently he had a surgery (performed in bulgaria) 3 months ago that was unsuccesfull. 10 days ago he went to the same american hospital in turkey and they performed a cyber knife to a tumour with size 52mm x 40mm for 5days in a row 1.5h each session.
    They couldnt reach the tumour with surgery.

    Now the doctors in turkey are suggesting avastin.
    Do you know how many courses of it is necessary? They only said its being done every 2 weeks infusion.

    Thank you

  3. #113
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    Hi, Smaragdin. Sorry to hear of your dad's recurrence.

    Avastin treatment is continued for as long as it keeps working and as long as the patient can tolerate it.

  4. #114
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    We are having difficulty chosing the right chemo here. The hospital in Turkey which is all American based are suggesting Avastin but the Hospital in Bulgaria are suggesting BiCNU (as avastin is still not approved in Bulgaria/Europe) . What do you guys know about them 2 chemos and which one do you think is better and why?

    Thank you

  5. #115
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    I was actually surprised to hear Avastin was being considered for your dad at all, because I know that it is seldom used in Europe.

    What I think, based on what I have seen in this forum and from talking to doctors (I do not have any medical training) is that Avastin is better. The reason it is not approved in Europe, in my opinion, is the high cost of Avastin. Although European doctors will refer to studies which they say prove it doesn't work, I think money is the real reason it's not approved. Avastin does seem to work for a period of time ranging from months to about 2 years, for most people I've run into who have had it.

    It is pretty much always used as the second line of defense against GBM in the United States.

    I'm not familiar with BiCNU, but I'm reading up on it now. It seems to be an older drug. I find a study from 2009 that says

    "BCNU treatment appears to be a valuable therapeutic option for recurrent glioblastomas, where no other validated radio- and/or chemotherapy are available." (Italics mine.)

    Here's the study:

    https://bmccancer.biomedcentral.com/...471-2407-10-30

    Note that of 35 patients, 3 had really bad side effects and had to be dropped from the study. I also think the survival times they mention are not good.

    Just from a quick google, I'm not finding any more recent studies, though I found some older ones.

    Cut to the chase: If you're asking my opinion, as a non-medical person, I think Avastin is better.

  6. #116
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    Thank you for your comment GBMsibling.

    I have spoken to so many doctors and I'm really confused now.

    I know you cant tell but what do you think, My dad has 2 surgeries and 3 cyberknifes permormed. Do you think its safe to have Avastin and not have a stroke?

    Obviously it is a difficult question and no one can actually say that but is it very often when people have strokes when using Avastin?

    I just came back to Bulgaria to see him and he is definitely not well. His head is "swallen" like and he cant talk properly and it is very obvious now that his brain is damaged. He can't read anymore. Things dont look great to be honest....


    Basically we have to choose between having a treatment that can kill you or treatment that cannot stop the tumor growth and therefore kill you.?????........
    Last edited by smaragdin; 06-19-2017 at 09:12 PM.

  7. #117
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    Essentially that is the choice, yes. However, from the description of the other drug, it sounds like both treatments can be fatal. I can tell you that being on this forum for 6 years I have not seen anybody killed by Avastin. I have not seen anybody who has had a stroke from Avastin either.

    When my sister chose Avastin, a nurse sat down and explained to her all the possible side effects. My sister said "I have to compare that to the side effects of not having Avastin."

    So, there are no great choices, but my sister, having said that, chose Avastin, and it's what I would choose too if given that choice.

    (Caveat once again for the lurkers: I am not a medical person.)

    His head looking swollen might be from Dexamehtasone.

  8. #118
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    Thank you very much once again!!!

    We are going to Turkey tomorrow and will be seen by the doctors on Friday. He started taking less dexamethasone now and by 12 days he will completly stop it. He actually started reading some words now which is amazing but he still cant understand what i'm saying.

    He was eating a lot btw. He was waking up every 2 hours during night going to the toilet and straight after he is having a fruit (banana or cherries what ever he can find) but i have told him that he needs to stop doing that so he is doing better tonight.

    What is the midian survival after taking avastin roughly? And also is that the last available treatment ? Is there anything else we can use in case avastin dont work or stops working do you know?

    Also I dont really want to think about it but...how does it end in the end?? whats happening? really sorry i have to ask you that question.... and thank you very much for all the support and answers you have been giving me thru all this years!!!

  9. #119
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    The Dex is probably responsible for the eating. It increases the appetite.

    After Avastin, the only remaining option is usually experimental treatment; that is, drug trials.

    I don't know the median survival time with Avastin. Every study that I've seen on Avastin seem to report different results from the other studies. I know that my sister lived about 18 months after she started taking Avastin.

    How it ends depends on where the tumor is and other factors. For most people, there seems to be a gradual loss of functions, loss of balance (you have to be careful about falling), becoming bedridden or nearly bedridden, sleeping more and more of the time, and then a slip into unconcsciousness. Once the person become unconscious they may live anywhere from a few hours to a few days.

    My sister lived six weeks after losing consciousness, but that is really, really unusual; I have never heard of it happening to anybody else.

    There are two things that people with GBM and family members worry about most, and both of these things almost never happen. The first is pain. GBM in the endstage almost never causes pain. The second is that the person with GBM might stop recognizing loved ones. This also almost never happens, most people with GBM will continue recognizing loved ones.

  10. #120
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    Thank you for your reply!!

    We just came back from Turkey. We have seen the oncologist and we have done the first infusion with avastin. So far so good. Apparently the most common side effect is bleeding nose. The doctors also said that i have to watch out for any blood in his excrement and urine.

    He is struggling to understand what are people saying to him and respectivly he cannot say what he has in mind. He is also aggresive and gets nervous really quick. He is taking desicions very spontaneously which are wrong in most cases.

    They also suggested very strong diet such as : no sugar, no salt, no fast food, all the food to be very well prepared and the hygiene must be on very high level.

    Have you got any suggestions how to increase his white blood cells count? they are about 110 atm and they need to be at least 130.

    When i asked if theres any other drug available the oncologist said that for 2nd line treatment for gbm Avastin is used. If avastin does not work there is another medicine available.

 

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