Glioblastoma, no symptoms after therapy,what to expect?

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Glioblastoma, no symptoms after therapy,what to expect?

by elehope on Thu Nov 22, 2012 12:15 PM

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Good afternoon everybody,  I first want to apologize for my English  and I'll try to do my best to express myself.  In August  my 39 years old sister was diagnosticated with glioblastoma multiforme grade 4. After a successful surgery in September, she started the standard therapy (radio+ temodal). In two days she will finish the first cycle and then doctors just say she'll have to take temodal 5 days a month. It could sound incredible but she haven't had  any effects during therapy. She just lost hair and could not really move her right leg but this situation was already present after surgery. My question is:  the fact to have no symptoms at all, is it maybe due to her young age?and now?could it be taken as a first-small miracle? what to expect now? I'm sorry if I sound a little bit childish in this light hope but since doctors told us that glioblastoma survivors don't exist and just miracles could bring my sister to a more than a 2 years life , I'm trying to catch even smallest signals to find the strength to go on. She has a 4 years old baby and even a day more could make the difference. thanks everybody, it feel so good to find a place (even virtual) to have the chance to talk about this horrible dead sentence.  

RE: Glioblastoma, no symptoms after therapy,what to expect?

by siblingof on Thu Nov 22, 2012 01:17 PM

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Hi Elehope. Sorry to hear about your sister diagnosis. My sister also has glioblastoma. Like your sister, she had very little difficulty with the six weeks of radiation/Temodar. I think yes, their age could be a reason for this. My sister was diagnosed two years ago and is still alive. This isn't a miracle... it's fairly common. My sister's tumor has returned and is progressing, but many people on this message board have survived longer than two years with GBM, in some cases much longer. But concentrate on today. This is a long journey.

RE: Glioblastoma, no symptoms after therapy,what to expect?

by Randy1958 on Thu Nov 22, 2012 08:42 PM

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On Nov 22, 2012 12:15 PM elehope wrote:

Good afternoon everybody,  I first want to apologize for my English  and I'll try to do my best to express myself.  In August  my 39 years old sister was diagnosticated with glioblastoma multiforme grade 4. After a successful surgery in September, she started the standard therapy (radio+ temodal). In two days she will finish the first cycle and then doctors just say she'll have to take temodal 5 days a month. It could sound incredible but she haven't had  any effects during therapy. She just lost hair and could not really move her right leg but this situation was already present after surgery. My question is:  the fact to have no symptoms at all, is it maybe due to her young age?and now?could it be taken as a first-small miracle? what to expect now? I'm sorry if I sound a little bit childish in this light hope but since doctors told us that glioblastoma survivors don't exist and just miracles could bring my sister to a more than a 2 years life , I'm trying to catch even smallest signals to find the strength to go on. She has a 4 years old baby and even a day more could make the difference. thanks everybody, it feel so good to find a place (even virtual) to have the chance to talk about this horrible dead sentence.  

Good afternoon hope,

Your English is good and you're expressing yourself just fine :)

I was DXed with GBM in late February, and the docs told me the same thing about how much (or how little) time I had left.  She (and you) should disregard their "predictons", because there ARE long term suvivors out there, one of them is a woman named Cheryl Broyles; if you have Facebook, you can look her up; if not she has a webpage, "Life's Mountains".  She is a great lady and a wonderful advocate for the cancer community.  She was DXed with GBM in June 2000, but she's been too busy climbing mountains and kayaking, among other things, to give much thought to dying.  She's still among us, alive and well.  There is also a man named Jerry Kline who was diagnosed in 2004, who has a website as well.  There are other survivors as well, some of them going back into the 1980s; I've heard there were GBM survivors from even earlier--the 80s was when the Internet began to get going.  So this IS survivable.  This I know . . . I did the radiation and chemo, and my MRIs have been good (the last one, about two months ago, revealed, to put it in docspeak, "no evidence of recurrent or residual neoplasm".  So barring further complications I should be released to return to my job, and we'll watch further via MRIs every other month or so.  It's still very early in the game for your sister, she's young and the fact that she hasn't had real adverse effects show she has a lot going for her (the only hair I've lost was along my left temple, from the proton beam --- I never lost any during chemo).

Hugs to both of you, God bless, and keep us posted.  We're here to help.

Randy

 

RE: Glioblastoma, no symptoms after therapy,what to expect?

by elehope on Fri Nov 23, 2012 01:24 PM

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I don't know how to thank you..you both are living this nightmare and still have the strength to give me such a will to go on and belive everyday little miracles. my hope is to be brave enough to be like you and be able to transmit the same feeling and peace to anyone will ever need my support. I'll keep in touch and will continue reading your words. Kisses, ele

RE: Glioblastoma, no symptoms after therapy,what to expect?

by jon4156 on Fri Nov 23, 2012 07:28 PM

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My advice is to do what most of us are trying to do, live for today because there's no telling what the future holds.  Be aware of and respect the statistics surrounding this disease, but at the same time hold out hope for beating it.

Your sister is in a good age group for success but don't let your guard down.  Keep up to date on medical advances and keep in touch with other people who share this disease through forums such as this one.

While the elderly tend to have issues with radiation and the first months of chemo, the vast majority of patients show limited or no side effects so it is not surprising that your sister appears to be doing well.  Unfortunately it is not a reliable indication of whether she is doing well, only regular MRI's will give you that information.  Also understand that side effects from radiation treatment do not usually show up immediately and can appear years later.  My wife showed no radiation side effects for almost a year before some of her cognitive abilities showed signs of weakness.  The good news is that 20 months later it appears those side effects have peaked and her brain is functioning much better.

Rejoice that your sister is doing so well, but keep your battle gear on and stay ready to fight the disease if necessary.  The worst thing you can do at this point is let your guard down.

 

RE: Glioblastoma, no symptoms after therapy,what to expect?

by chloeb on Fri Nov 23, 2012 09:54 PM

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My husband has been fighting this disease for 14 months now and doing well.  He was taking temodar but he is now taking another chemo drug with avastin.  The avastin seems to be shrinking the tumor his last 2 MRI showed the tumor has shrunk.  He is 57 years old and has no other symptoms except slight daily headaches which he takes tylenol for.  You can't dwell on the long term with this awful conditon.  Try and take things a day at a time. 

RE: Glioblastoma, no symptoms after therapy,what to expect?

by phyllischarles on Sat Nov 24, 2012 01:24 AM

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Thanks for this post

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