Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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Gbm Survivor

by Blessed4life on Fri Oct 20, 2006 12:00 AM

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Sorry to hear your husbands symtoms have worsened, but at the same time, so glad to hear how well he is doing. My husband was diagnosed on 01/05/04 and is still doing very well. In 1999 my husband had an accident on the job and fell. It caused a small tear on his brain that caused seizures. With us, the seizures came 5 years before the diagnosis. For a while the meds kept him from having seizures and all was well we thought. Then he started seizing more and more, becoming dioriented, clumsey, etc. His doctor kept upping doses on meds to try and get seizures stopped, but to no avail. We thought all the new symptoms were med related, and your husband's very well could be because having to take high doses of meds definately cause the tiredness and grogginess.But I would get an MRI as soon as possible. Dave's tumor almost took his life before we found it because even his doctors just assumed it was all because of his meds. This disease can be so aggressive it's best to stay on top. Let me just say too, one of the most important lessons I've learned through our experience is, before every doctor visit pray that the Lord will put a hedge of protection around your mind so that fear and dread can't enter in. You MUST stay informed and not deny what is or isn't happening healthwise, but there isn't anything the doctor can ever tell you that can change who God is. GOD IS GOD whether you are sick or healthy. Knowing the truth won't change God's hand on you. You have to trust Him. I refuse to let fear and dread of what may happen rob me of what I have today. Today is one more day I was blessed to have my wonderful husband with me and I know every day is a gift. You're in my prayers, and I wish you the best.

Brain Cancer

by Pioneer on Fri Nov 10, 2006 12:00 AM

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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.

Hello.

by Johnjr on Sun Nov 12, 2006 12:00 AM

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I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation.

Hello.

by Johnjr on Sun Nov 12, 2006 12:00 AM

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I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation.

Hello.

by Johnjr on Sun Nov 12, 2006 12:00 AM

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I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation.

Hello

by Gaylec on Fri Nov 17, 2006 12:00 AM

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I am also looking for long term survivors. My husband was diagnosed in October with GBM. He had the tumor removed in surgery, and is currently in middle of a focused radiation and Temedor regimin. he also takes Kytril to prevent nausea, and Keppra to control seizures. When he eats, sometimes he gets a little twitching, so he stops for a moment until it passes. He kept gettting smaller seizures, but found out that by spreading out his Keppra instead of just morning and evening, he can prevent them. We also discovered that he can stop one that is beginning to start by taking Keppra right away. He is also taking a low dose of Decadron. We were hoping to get on Avastin as well, but there were no cells left from the tumor, which were needed to be in the clinical trial. We also can't go off label, as the drug is apparently temporarily unavailable for off label for now (at UCLA) He seems to be doing pretty well, but has fatigue and hair loss. He also seems a little weaker, as his hands aren't as steady. But he has a good attitude and we will fight this. He does occasionally get cranky, and is a little harder on me and our daughter, but is very friendly and courteous to everyone. I am hoping things change and we can to take Avastin before the GBM reoccurs, as I hear this drug has been very beneficial to colon cancer patients. A couple of things I have learned - do your research - the first hospital said it was inoperable. We then went to UCLA and it was successfully removed. Keep informed, and dont be afraid to ask a lot of questions. It is super important to have a patient advocate, ( I am for my husband) to keep an eye on what happens in the hospital, and keep things straight (ie - NO dilantin, if you want to be eligible for certain clinical trials. I had to be adamant about that with some doctors) My husband yearns to be normal, and have fun watching football on TV with his friends, without getting grilled with tons of questions about his treatments. He prefers to leave that up to me. Dont know if other patients have those types of feelings or not.

Glioblastoma - Beating The Odds

by winningteam2 on Wed Nov 29, 2006 12:00 AM

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My husband is doing better. Changing his anticonvulsants seems to have helped a lot so he is not falling down! He is also trying Ritalin for some energy. He was diagnosed in early 03 so we optimistically approach 4 years of survivorship! He said from day one that he did not accept the dire prognosis. That is what I would like others to know- he made up his mind to be in that miniscule group of people who beat the odds,at least for now. We cherish every day.

RE: Sulfasalazine For Gbm !!!

by Manfred on Mon Jan 08, 2007 12:00 AM

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On 8/23/2005 Cidorov wrote:

Research published by Dr. Sontheimer from the University of Alabama. This med already fda approved for Chrones and Rheumatoid arthritis showed tumor halt or reversal in imunosupressed human glioma induced rats after 48 hours. My wife was diagnosed and had 5cm by 5cm resection in june. Is now in fourth week of radiation and temodur. Started sulfasalazine three weeks ago. up to 3.5 grams a day and will increase to 4 grams as tollerated. Sulfasalazine bypasses the blood brain barrier and suppresses "system X" which produces death in normal healthy tissue and manufactures a substance that protects the gbm from normal cell death or harm from free radicals. Radiation produces a temporary state of high free radicals to induce chromosomal damage to interfere with replication. The rats in this study just got sulfasalazine. we are hoping the combined effect will be dynamic. Anyone wanting to know more can google sulfasalazine and glioblastoma. I have been coresponding with Dr. Sontheimer and they are looking at a dose of 4-6 grams a day over 3-4 dosings per day. We wont have any imaging until 2-4 weeks after the 6 week course of radiation and temodur. Oncologist says they can't get a good picture while radiation is ongoing. I will repost developements here.

 

Have you had any success with Sulfalazine? I have GBM stage IV and it looks promising but I have not heard any success stories.

Your response is greatly appreciated!

Manfred

RE: Glioblastoma-avastin

by Klmot on Tue Jan 09, 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.

wanted to see how your husband was doing?  I lost my mother to this disease 4 years ago and she was amazing through it all!

RE: Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

by Daniellek on Fri Jan 19, 2007 12:00 AM

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I have stage 4 glioblastoma multiforme in summer 06 and my doctors recently said my cancer is inactive
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