Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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RE: Husband Has Gbm 4

by Meaghann on Wed Jan 24, 2007 12:00 AM

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Hi-

 I read your message and wanted to know how your husband is doing? Has he regained any function? My father was diagnosed exactually a year ago. He was doing very well until the day before Thanksgiving when his tumor began to bleed. In the last two months his function has gone from normal to that of a cripled old man. His is constantly tired, can hardly walk or get up on his own, and has lost the ablilty to write legibly. Do you have any advice as to how to help him regain function? I appreciate any information you have.

 Thanks,

 Meaghann

RE: Sulfasalazine For Gbm !!!

by Jadey on Fri Feb 02, 2007 12:00 AM

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Please let me know how you are doing with your treatment. My husband just started on Tamador, Radiation and an experimental drug which is akin to Avastin.

thanks,

RE: Brain Cancer

by Helayne on Sat Feb 24, 2007 12:00 AM

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On 11/10/2006 Pioneer wrote:

My wife was diagnosed with several forms of cancer with the brain disease being the most significant. Last January she lost the ability to speak and basically seized, was hospitalized and recommended for hospice. My wife reacted poorly to the various anti nausea drugs such as Zofran and Anzemet. I found that she was served better with simple phenergan and very low amounts of Anzemet. I have had to cut the lowest strength in quarters which seems to work well for her. After recommendation for hospice I pulled out all the stops doing as much research and creative thinking as possible. I piggybacked on some anecdotal successes and refined them into an alternative treatment program. My background in medicine and science finally provided some real benefit. My wife was so sick and weak that getting the nutrients and immune system enhancers into her was a real challenge. Tumors in the frontal portion had altered her sense of taste and odor so that everything basically smelled like odors of the bowel to her. I found one taste/smell that she seemed to be able to tolerate and worked from there. In her case orange smelled okay and I used orange oil to mask the glyconutrients in water. I was able to progressively get more of the nutrients in and she responded quite favorably. My wife has recovered quite well and has even been able to even mow our lawn. She has recovered some of her lost vision to a point that she only needs glasses for the small print now. unfortunately she lost hearing in her left ear completely. But lately she has appeared to get some level of hearing back in that ear as well, not a lot but some. I am not into multilevel marketing schemes but some of the products I have utilized are primarily marketed that way. I have reduced my monthly costs on supplements but they are still expensive. In my case I cherish every moment with my wife and it has been well worth the sacrifice. To save costs I load "00" capsules with my formulation which is the primary supplement that my wife takes. My wife was initially scheduled to have gamma knife surgery but was found to have multiple tumors as well as cancer of the lining or menenges. She was then given whole brain radiation and spinal radiation for tumors on her spine which had made it impossible for her to walk. The spinal radiation appeared to have been the most successful with almost immediate benefit. It was only a month after the whole brain radiation that the medical specialists recommended hospice. I am writing this late at night and I know it is probably rambling at this point. But my wife has done quite well for someone that was told she wouldn't live to see her grandson born in June. Her oncologist now says to just keep on doing what we are doing with the glyconutrients because he knows the chemo cannot have accounted for the turnaround.

 

My friend was just diagnosed with a stage 4 glioblastoma multiforme.  I am a nutiritonist and am working to help complement her chemo and radiation treatments.  What "glyconutrients" did your wife use that have led to your wonderfully successful outcome?

 

 

 

 

RE: Looking For Glioblastoma Survivors Stage 4

by Brian_p on Mon Mar 19, 2007 12:00 AM

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I am a 42-year-old male, and I have glioblastoma multiforme, stage 4. My cancer was diagnosed in late October 2003, after I had a baseball-sized tumour resected from the right parietal lobe of my brain. My prognosis was 18-months to two years. I am now in my fourth year. Three weeks after surgery, I started a six-week regimen of daily radiation treatments. I tolerated the first three weeks of radiation well, but by the fourth week, I definitely began to experience a sigificant amount of fatigue. At the end of the six weeks, I was napping at least two hours a day. I also came down with Thrush, a side effect that would afflict me more than once during my subsequent chemo treatments. At the end of January 2004, I started monthly chemo treatments, taking Temodar twice daily for five days, with a break of 21 days in between. I initially took Kytril to prevent nausea, but eventually switched to Ativan. Kytril made me so constipated that I went for days without a bowel movement. and when I was able to go, the movements were unbelievably painful. The situation became so dire that I had to have surgery to repair a bleeding fissure caused by the hard stools. I know that these details are indelicate, but I feel I should be honest about my experience. I continued chemo treatments until October of 2006, at which point, my hematologist agreed to allow me a three month hiatus until my next MRI that December. My scans have consistently shown no significant changes since early 2004. The MRI in December was just the same, so I have been permitted to again forgo chemo until my next scan, which will occur in the next few days. The tumour I had resected in 2003 damaged the area of my brain which controls the left side of my body. As a result, I have lost the ability to use my left hand with any precision. I used to play the piano, but I can do so no longer. I must also use a cane and walk very carefully, because often my left leg or foot fails me, causing me toI trip or fall. The radiation and chemo have had an effect on my stamina, my memory, and my cognitive abilities. Despite these impairments and losses, I count myself blessed to still be alive, considering how few with glioblastoma survive as I have. I hope my story will be of interest to others visiting this site. I have taken no special vitamins or supplements to survive this cancer. I have followed my doctors' directions and have made a habit of getting as much rest as I can. At times I have pushed myself to maintain a normal routine, and at other times, I have let myself spend the day in bed. I am no Lance Armstrong. I didn't run marathons before the cancer, and I don't intend to run one now. I think the essential thing is to keep on living as best as you can. Don't allow the cancer to define who you are. As much as you are able, be the person you were before you were diagnosed with glioblastoma multiforme.

RE: Looking For Glioblastoma Survivors Stage 4

by Mtp6061 on Wed Mar 21, 2007 12:00 AM

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Hey Brain - thanks very much for your encouraging message.  My wife Rose is three and a half months post-op for her GBM and has undergone radiation with concurrent temodar.  Her first MRI after the six weeks of radiaiton was clear and looked good.  Now she is going to start Temodar on the 5 days on and 23 days off routine.   I wanted to ask you how come you were taking Temodar twice a day instead of once a day?  And about the Ativan as an anti-nauseau med?  If you would please get back to me I would really appreciate it.  Also could you tell me who your doctor and where they are located,   thanks,  mike

RE: Looking For Glioblastoma Survivors Stage 4

by Brian_p on Wed Mar 21, 2007 12:00 AM

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Mike, Sorry to hear your wife has glioblastoma, but it sounds like her condition is stable, which is encouraging. With this disease, it's essential to take things one day at a time,and not to look too far ahead. I live in South Bend, Indiana. My hematologist is Dr. David Taber. When I started chemo, I took the full daily dose at once, but did not tolerate it very well. I switched to two pills and things were better. I would come home from work at 3:45, take the first pill, and then nap for an hour or so. I would take the second pill just before bedtime, that way I could sleep off the effects. I preferred Ativan to Kytril, because its effects are milder. The kytril dehydrated me too much. Unfortunately, the Ativan is somewhat addictive, but I found I was able to stop it without too much difficulty. There are many other anti-nausea medications, so be sure your wife asks for an alternative, if she finds the side effects of any one of them too unpleasant. Whichever one she chooses, be sure she drinks plenty of water. Hydration is critical during chemo. By the bye, my latest scan showed no changes, so I continue to be in remission. I hope your wife will be able to say the same three and a half yearsfrom now. - Brian

RE: Looking For Glioblastoma Survivors Stage 4

by Meglr11983 on Mon Apr 16, 2007 12:00 AM

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Hi everyone,

This is the first time i've reached out for information, but i figured i would give it a try.  On April 13 (Friday the 13th), my father was diagnosed with a Glioblastoma Multiforme in his left temporal lobe and partly in his thalamus. He is 50 years old.  It is an inch and a half in diameter and the doctor stated that becuase it is so deep in his brain, they would cause more damage trying to remove the tumor than leaving it in there.  He is going to start radiation and chemo in the next week and  half or so.  He will be taking the pill form of chemo. He had no visible symptoms - he would slur a word every once in awhile and forget how to do things.  In the three weeks since he approached his doctor, his speech has gotten worse and he has weakness in his right side.

I guess what i'm looking for is support, information on how your families made it through this.  I know we have to stay positive and keep hoping for the best.  It seems that everyone on this board has had a craniotomy, which is impossible for my father.  I would like to speak to someone who who could not have surgery and what they went through.  Even some coping mechanisms would be great. 

 My mother, his caregiver, has been great with him.  When she is not with him though, she's in shambles.  Understandably.  She has not been on her own her entire life and has been completely dependent on my father for the almost 30 years they have been married.  She's having a very hard time with this, and i don't know what kind of support to give her.  I can not help her, as i am 2 states away and we have never gotten along.  I know i should stop being selfish and get along with her, but it takes two to tango.  I am worried about her as a caregiver for her health and sanity.  She has high blood pressure, is a worrier and flips out about the smallest things even in times of low stress.  What kind of advice can i give her, or provide for her in this very difficult situation? 

My father is n the care of the Chief Neurosurgeon at Dartmough Medical Center, Dr. Roberts and his oncologist is Dr. FAdul - a world renowned neurooncologist.

I'm just looking for hope at this point.  Some sort of positive note.  He has 2 daughters and 2 beautiful grandaughters and was finally happy and peaceful with his life.  Please, please help.  I am desperate at this point.

you can email me at 

--- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

 if you would like.

 Thanks,

 Megan

RE: Glioblastoma-avastin

by Lisey07 on Wed Apr 18, 2007 12:00 AM

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On 8/31/2006 Gennie wrote:

My husband was diagnosed almost 4 years ago with this dreadful disease. He has been clear for 3 years until the recurrence last 11/05. He is now taking Avastin which is not yet FDA approved. We will know in October if this is working for him. For those who want to have Avastin for Glioblastoma, ask your oncologist to enroll in SPOC program where they will cover expense if the insurance rejects it.

Hello,

Our worlds have turned upside down in the last 3 weeks. My beautiful mum has a glioblastoma, grade 4. Please, please tell me what treatments your husband has had? I cannot lose my mum. When you say he was clear for 3 years, did they actually 'cure' the disease or was he still having treatments.  What is Avastin? We have been told nothing by the hospital about other treatments than radiotherapy.

Does anyone have any alternative therapies to suggest as well? Please help... I am desperate.

RE: Looking For Glioblastoma Survivors Stage 4

by Dreamgrl1205 on Thu Apr 26, 2007 12:00 AM

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Megan,

 I am going through the exact same situation as you.  It is helpful to know someone else is out there with similar circumstances.  I have looked and looked all over the internet to try and find survivors of Glioblastoma Stage 4 but have yet to find one.

 My dad was diagnosed with a brain tumor the day before Easter of this year.  We found out two weeks ago that it is inoperable.  Needless to say, we were devastated.  He is going to be taking chemo drugs and radiation next week.

 It would be nice to keep each other informed of how our situations work out.  I wish there was more information out there about people surviving without surgery but it is few and far between.

 Take care,

 

Dana

 

RE: Looking For Glioblastoma Survivors Stage 4

by Gilda1981 on Wed May 23, 2007 12:00 AM

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Hi there,

My mum has just been diagnosed with GBM4 only about three weeks ago. She presented with poor vision to the eye specialist, who then ran some tests, which showed that there may be a blockage some where in the brain. She was then sent to get a CT scan and this showed 2 tumors, one in her frontal lobe, and one on the occipital lobe.She was immediately reffered to a neurosurgeon (Dr Michael Biggs - Sydney NSP) who addmitted her into hospital and she had 2 surgeries, to remove both tumors.

She is back home today, and i must say is doing really well, her word finding is a little off, and her vision not the best, but she has had no paralysis, or seizures, and is in good spirits.

Mum has started her Temador 120mg and Radio therapy, and so far no bad side effects... just really sleepy at times.

There are survivors out there, and i keep this in my mind all the time... i belive she will beat this.

If there is any one out there in OZ, or wherever who would like to talk about this situation, and is new to the whole GBM4 thing, please i would love to hear from you.

Love to all

Gilda

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