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courtneylemm
New User
Joined: 26 Sep 2006
Posts: 2
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 Posted: Tue Sep 26, 2006 10:18 am Post subject: the best advice I can give you.... |
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| My grandmother was diagnosed with a glioblastoma multiforme grade 4. Her doctors gave her 4 weeks to live. We decided against listening to him and found another doctor then another and another until one was finally willing to work with us and for us. Dr. Laura Campbell was considered crazy and out there, but she gave my grandmother 1 and a half years of life. We did chemo, peacock therapy, temodar, and several other experimental drugs. One day we took her for a routine brest exam. The doctor there found breast cancer, but refused to treat it. The worst decision we ever made was to accept that nothing could be done for her breast cancer. That cancer grew so rapidly that it spread to her lungs and caused pnuemonia. She died from pnuemonia--not her GBM. At the time of her death her GBM had decreased by half it size and stayed that way for 5 months. This had never been seen before not even at the houston medical center. So the best advice I can ever give you is if any doctor you come to tries to take away your hope-leave. Walk out of there as fast as you can! Never give up your fight against this ugly ugly disease. There are treatments, there are options, and if a small town doctor in Louisiana can give a woman with 4 weeks to live a year and a half I know there are ways to help you and your loved ones. Never give up--you are the only advocate your family has. |
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Shanafeb2000
New User
Joined: 09 Oct 2006
Posts: 2
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| Posted: Mon Oct 09, 2006 8:20 pm Post subject: Re: My Grandmother has GBM! |
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| Hey - My name is Dana. I am sorry about your husband. My husband was diagnosed with GBM in April (he is 37). We were told last month that he had a recurrent tumor of 3cm. We were given the option of surgery and then Avastin or no surgery and immediately go on Avastin. In the meantime he had a massive seizure and was in the hospital for 2 days and he had memory problems. We got his medication fixed but were so freaked out with his loss of word finding that we opted to do surgery first. It was a miracle and the mass ended up being dead tumor tissue when the PET and MRI's both pointed toward reccurrance. Have hope. Dana |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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| Posted: Sat Oct 14, 2006 10:45 pm Post subject: Re: My Grandmother has GBM! |
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GBM can be so different from one person to the next. What might be "giving up hope" for one person, might be "opting to live a higher quality of life" for another.
I know because my mother had GBM and died within 2 months of her diagnosis. However, it was not detected until it had speed throughout most of her brain. Surgery would have been devastating for her. Radiation treatments would not be much better. And there was no chemo option at the time.
On the other hand, I had a recurrence of a Grade 3 brain cancer (related to be not a GBM). It was smallish, right on the surface of the brain. So surgery followed by radiation therapy was a viable option for me. I had chemo the first time and did not want to be sick all the time, especially since I was the primary care provider for my 83 year old father. Therefore, taking all the medical advice into consideration, I opted NOT to take any chemo. I am doing well.
My point is this: The options and personal life issues are too complex for me to tell anyone else what they need to do. I CAN advise anyone to get the best medical advice available to them, to read all that they can, to join this forum and post their questions, and to make sure they have a good support system.
God be with everyone who is affected by this dreadful illness called “Cancer.”
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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Kris
Experienced user
Joined: 23 Jul 2006
Posts: 76
Location: Geneva, Switzerland
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| Posted: Mon Oct 16, 2006 3:55 am Post subject: Hope |
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Dear Jim,
I fully agree with you when saying "What might be "giving up hope" for one person, might be "opting to live a higher quality of life" for another".
My 61-yr-old beautiful Mum was diagnosed with GBM the same way as you Mum: the tumor was too huge and spread into most parts of the brain, even infiltrating the corpus callosum. So, the same story: surgery, radiation would have been too devastating for her, veen could have killed her immediately. So, she/we opted for palliative care only, i.e. steroids, mannisol and pain killers, and she had 2 pleasant, warm summer months at home with her loving family in a good-quality of life, then half-a-month of Indian summer with hospice care at home, and now she' s back in hospital for 12 days - winter is approaching....
Palliative care gave us 2.5 months of great time together!
Take care Jim, my thoughts and prayers are with you.
Kris |
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