Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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Surviving Gbm

by Albertoid on Sat Dec 17, 2005 12:00 AM

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My wife was diagnosed with GBM level 4 in 1987 at age 25. She was told that she had 18 months. The tumor was on the left temporal lobe and was resected. She had full brain radiation and chemo (two kinds--not sure what). I met her in 1991. The doctors were amazed that she was still alive. I don't know how many times we've been told that the diagnosis must be a mistake. But it wasn't. This been confirmed.

The treatments had caused some side effects--some short term memory problems, slight speech issues, loss of some hair, and mild seizure disorder for which she tood medication. But she was well and remained so pretty much for ten years.

We got married in '93. Her seizure disorder got worse in the mid-nineties. In '97 she had a major problem with status epilepsy--uncontrolled seizures and was in the hospital for months and then rehab for six months. She recovered fairly well, but sustained brain injury. Still, she could walk, take care of herself, talk (with difficulty) and so on.

This year, she couldn't stand up one day and they discovered a large tumor, not a GBM, but an anaplastic meningioma, thought to be caused by radiation treatments. She has not been doing well since the surgery.

I guess I want to get across a few points:

1) Doctors speak in statistics. They don't know. My wife always thought positively.

2) Survival of GBM is a relative thing. If you do survive long term, the side effects of radiation treatments unfold over many years, even decades. These include seizures, brain atrophy and premature aging, and other problems, such as dementia.

3) For you survivors who have had full brain radiation--there may be things you can do now to help prevent some effects down the road. Knowing about it in advance may help you to head off some disasters (regular scans can help catch new tumors; close monitoring of seizures can help uncontrolled seizures etc). Talk to the radiation oncologist about it.

4) If you can avoid full brain radiation and go for more precisely directed treatment, consider doing so. This may not be possible, but it's worth looking into.

5) Make your doctors talk about long term effects of the treatments--they tend not to because they think you'll die before side effects set in. So you have to push them to talk about it.

Thanks for reading my long message. Good luck to you all. I am interested in hearing about other long term BGM survivors and how you are doing with radiation side effects.



by Alline on Sun Mar 12, 2006 12:00 AM

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hi my name is alline i have 24 year old cousin that diagnose with glioblastoma 2 years ago she had one surgery when she was first diagnose she had radiation and chemo plus esteroid she also would go to mri every couple mouth the tumor use to be the side of a egg when it first start but after a year it got small as olive she did great for the follow year but this year we had bad news 3 weeks ago her face sart getting kind twisted to the side we decide to take her to the hospital her tumor glow back bigger she had a another operation but even then the doctor say is just to prolong her and that she only had less then 6 mouth to live with her first they also they say that they didnt aspect her to live more then 2 years from the first place they say that they will not perform another operation because she will go in acoma for life they also wont recomend radiaton she is very agraveted and also her memory is shorter then 3 minutes. thanks for readeing my long letter i will take any info or testimony that any body would have.

How is The Sulfasalazine Working?

by Alzbeta on Wed Mar 15, 2006 12:00 AM

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Hi - My dad was diagnosed with GBM4 (inoperable) and I am now desperatelly searching the internet to find hope. Came across your message and was wondering how is the treatment going? Is the sulfasalazine working? Any chance you could provide me with information on how to contact Dr. Sontheimer? Hope your wife is doing well. Best of luck! PS: Here is a Yahoo Group I came across for those of you who are looking for alternative approach soarce. It is definitelly worth reading http://health.groups.yahoo.com/group/FlaxSeedOil2/message/32640

Astrocytoma Stage 4

by Siddhartha on Thu Apr 13, 2006 12:00 AM

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My mother was just diagnosed with Glioblastoma Multiforme, or astrocytoma stage IV. She just had surgery this week, and my family (except me) are meeting with the surgeon/oncologist today to discuss treatment. I am interested in any/all information related to this, in terms of what alternative treatments, or combination therapies that have worked for you. We are willing to try anything to maximize her quality of life, and find a cure. I am a physician assistant in cardiac surgery in Boston Thanks Chris

my Dear Friend Has Glioblstoma Multiforme

by Sarah_Anne on Sun Apr 23, 2006 12:00 AM

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My best buddy was diagnosed with glioblastoma multiforme three weeks ago. The doctors performed brain surgery and removed 95% of the tumor. He begins target radiation in two weeks and is being seen by the neurological oncology team at Duke. I am a very close friend to both Ken and his wife. They have no children or family in the area. I would like to know how I can help them the most. Also, I understand that diet is extremly important. If anyone has any suggestions, please offer them. Ken is only 48 and is in excellent health, but he is overwhelmed by this scary news. Thank you for your help.


by Chris58 on Mon Apr 24, 2006 12:00 AM

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My husband was just diagnosed with a grade 4 Glioblastoma Multiforme, which is inoperable. We were told to start regional radiation and Temodar ASAP. It was also suggested to have a MGMT analysis done of the tumor biopsy in order to determine if a specific enzyme exist. If the tumor does not contain the enzyme, he would be more likely to respond favorably to chemotherapy. We were also told that the drug Avastin has been used on brain tumors with some positive results. Unfortunate it is not FDA approved for brain tumors (only colon cancer) so insurance companies will not pay for the drug, which is very expensive. I was told it would cost 10,000 dollars every two weeks.

Avastin and Glioblastoma

by b_in_California on Mon May 15, 2006 12:00 AM

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My husband has multi-focal GBM and saw recurrence 4 months after radiation, temador and tarceva (on a clinical trial). He has had 3 off-label Avastin infusions, 2 in combination with Carboplatin. Except for his cancer, he is one of the healthiest 63 year olds in the world. He has had only adverse effects since taking the Avastin. The first was a dental abcess which went on for about a month and required tooth extraction. Once he got off the antibiotics, he resumed the Avastin and about 30 hours later, we were calling the paramedics for a life threatening pulmonary emboli. He is now out of the ICU and eight days in the hospital and on heparin. No one in the treatment group has ever heparinized a patient with Avastin on board, which is terrifying since Avastin messes with blood vessels. His pulmonary emboli are getting better and he may be home tomorrow on oxygen. His risk of an intracranial hemorrhage is, and will remain, significant. I learn that GBM patients have a 2 1/2% risk of thromboembolism (the tumors evidently make a protein that makes one hypercoagulate--leading the clots). Genetech reports that this risk doubles with Avastin on board. So now my husband has nearly died gasping for breath, and he may still (if a clot gets past the vena cava filter that is now in place). He now may also die with no warning of a stroke (intracranial hemorrhage). And then there is the glioblastoma. We paid $27K out of pocket for the Avastin. The current hospitalization will likely approach $100K, for which we are insured. We will spend at least some weeks of the time we have left trying to recover from the pulmonary emboli. My husband was weakening but he could still work out on the treadmill and was driving. Now he cannot shave without oxygen on. I would not consider this the "benign side effect profile" that was presented to us. While we went into this with knowledge that Avastin was experimental, I fear that we overweighted the potential for good (because no one knew that it wouldn't work) and underweighted the potential for harm (there was no organized listing of risks since it has not been tested and reported on). While our doctor was straigtforward with us and we are not blaming him, I wish that we had been more cautious. Perhaps you may want to be.

Glioblastoma Multiforme iv

by Bills1gal on Thu Jul 06, 2006 12:00 AM

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My husband was diagnosed with Glioblastoma on 5/3/06 and had first surgery on 5/10/06. He was scheduled for rad/chem on 5/30/06, but we heard of a clinical trial at Duke Med Center and went there. Had 2nd surgery by Dr. Alan Friedman at Duke on 6/8/06 and he successfully removed 100% of the tumor "that he could see". Even though we know this was done, we know the spider legs are still growing deep within the brain. We were tested for 2 types of clinical studies, but unfortunately he did not qualify. We are home now and starting with 33 radiation treatments / 42 doses of Tremodor oral chemo today. We are a little nervous about results, but are keeping our hope and praying a lot. We strongly believe in the power of prayer. He will go back to Duke 2 weeks when this is finished. They have more clinical studies / protocols that can be followed. Has anyone out there been thru any of the clinical studies at Duke with success? We are so scared!! Debi

Looking For Glioblastoma Survivors Stage 4

by The_Greatest_Physician_is_God on Wed Jul 12, 2006 12:00 AM

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My very healthy father suddenly had trouble reading words and was slurring his speech. He drove himself to the E.R. We were suprised to hear that he had probably had a stroke. Two days later we were wishing it was a stroke. He was told he had a glioblastoma very large and to make matters worse it is located in his speech center. He was in the E.R. on 4/29/06 and had brain surgery a week later. They were able to remove only 40% due to the location. He has undergone 40 days chemo and six weeks radiation. He has been in the hospital numerous times now. Mostly due to brain swelling and steroid toxicity. Very difficult to keep his levels under control. He has now been in the hospital for two weeks. His radiation and chemo are complete. We have been praying for some remission but he just can't seem to eat or take hardly anything by mouth. He is in for severe dehydration and now has a N.G. TUBE. It is all we can do to get his daily meds into him with applesauce. He is also on a thick liquids diet. does anyone have any suggestions? NO ONE SEEMS TO KNOW WHY HE'S NOT EATING . He has lost so much weight and in two months is now skin and bones. It is hard for him to express whats going on due to the speech center being affected. Has anyone dealt with a similar problem?

Glioblastoma Multiforme

by Roses4jing on Tue Jul 18, 2006 12:00 AM

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Hi, This is my first time visiting the site and saw your message. We just found out my dad, age 48, has the Glioblastoma Multiforme tumor. The onologist telling us that he has two options. Either the standard radiation and chem. procedure. Or participate in this new trial study which they think it might help prolong his survival rate, but also not sure. This study has two options he can choose from: arsenic troxide or RTOG (high-volt of radiation). We don't know what to do. We feel safer going with the standard procedure, but if this study, if successful, can prolong his life, it is worth the risk. But that is the thing, "if." We can't get any comforting thought on this subject. But we need to make the decision on which procedure by the end of this week. I feel so lost right now...what are we to do????
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