Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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

by AnnaGA on Fri Apr 19, 2019 02:34 AM

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On Apr 18, 2019 8:47 PM jrmay wrote:

On Dec 23, 2002 12:00 AM Karen_C_5 wrote:

I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you

My wife was diagnosed in Feb 2011 received surgery, radiation, chemo, clinical trial.  She was clear for about 3 years and then had another tumor show up on her MRI.  She opted for a Clinical Trial and was on it longer than anyone else at UCLA.  She apparently was the only success story.  She developed a cyst the size of a golf ball and had surgery where the tumor and cyst were removed.  No live tumor cells were found.  She then developed hydrocephaly and eventually had a shunt put in.  Side effects from the hydrocephaly have continued.

But after over 8 years she has  is still alive and is gradually getting better.

Thank you for sharing your good news. We need to have hope and it’s important that people share their successes. All information is valuable. I met this amazing man, “Peter D.” At a support group. A 20+ year survivor! HOPE. https://www.virtualtrials.com/survivepeter.cfm All the long-term survivors I met said the same thing.... supportive family, extremely aggressive therapy and lots of faith and prayers!

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

by girls2boy on Fri May 10, 2019 08:35 PM

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We just found out my husband has Glioblastoma stage 4. The Drs. said we could try Radiation and chemo at the same time or not. He is 74 and was very healthy. Since the diagnosis he has gone from some recent memory loss to not knowing me at times and I need to watch him closely. I need to talk to someone who has been through this and can help me with how to handle problems that come up. I think I am going to need someone to come in and help a couple days a week, but he does not trust anyone.

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

by adiwan on Fri May 10, 2019 08:59 PM

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On Aug 03, 2018 2:16 AM adiwan wrote:

On Jul 18, 2018 5:57 AM masteele38 wrote:

Hi there! 

Is he still taking the CCNU and Tamoxifen or did he only do those drugs during radiation/chemo?  We are looking at the Care Oncology protocol, but I've been interested in adding other repurposed drugs.  My dad was recently diagnosed with GBM four weeks ago and he is just now starting Standard of Care.  We are also using various supplements and he is doing the KETO diet.  


Hope your dad is doing better. My dad (age 61) has also been diagnosed 4 weeks ago. He is undergoing chemo-radiotherapy. But we are unable to find the correct diet for him. He has lost 8kgs in last 4 weeks (93.5 to 85.5 kg, he is obese). Would request you to kindly share what is there in your dad's keto diet and where you got it form. And which supplements is he taking. Were keto diet and supplements prescribed by his treating doctor? Looking forward to your kind help. Any other inputs from anyone would be of great help too. Thanks

Would like to update everyone here that your doctor should be 100% sure about the diagnosis of GBM. My dad was misdiagnosed and got chemotherapy & radiotherapy without even having GBM or any cancer.  Lost him due to the wrong treatment. The neurosurgeon got my dad admitted for stereotactic biopsy but never did it and advised chemotherapy and radiotherapy. After undergoing that treatment my dad deteriorated and was in ICU for 4 months almost throughout on ventilator. During this hospitalisation it was found that he never had any cancer. When we asked the neurosurgeon as to why he assumed that it was cancer, he shamelessly replied that he didn't do stereotactic biopsy as the hospital did not have that setup and so he relied upon MRI report which all other neurosurgeons confirmed that it was not the correct way to diagnose. Now our fight begins for justice against the worst ever medical crime where the doctor killed my dad just for money. He didn't want to lose a customer so he got my dad admitted for stereotactic biopsy without even having that setup. So do ensure that GBM is properly diagnosed with biopsy and not on any guesswork as symptoms may be similar to GBM in many simple & curable brain ailments as well.

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