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.  

Hi,

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.

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

by SeanN on Mon Sep 09, 2019 02:46 PM

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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

I was given a GBM stage 4 last month. I'm almost done with radiation and chemo. I'm 47 and looking forward to extending my life. Your spirits are uplifting and I am looking forward to going far. 

My question for you is, 1) I'm pretty healthy but how much does eating help, and 2) what other alternative lifestyles can contribute to keeping me healthy, and 3) what other meds should I be asking for, and 4) other than Optune, what other alternative meds should I be asking for.

i plan on staying around for as long as I can but I need support. 

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

by IrynaF on Mon Sep 09, 2019 05:05 PM

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Sean, Check out current trials for Glioblastoma. Try to get into one either at Duke poliovirus study in North Carolina, or read Cheryl Broyles story she is on Facebook and I believe she is a patient at CA of Dr. Butkovsky (I cannot find correct spelling of Dr names now) she had survived for over 20 years with glioblastoma.

RE: Gbm Survival

by JackHCorley on Fri Sep 13, 2019 08:38 PM

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My hope is with you. My friend Jack has been diagnosed with a glioblastoma tumor in June 2019. He is 72, has unmetholated marker. Does anyone have any information on alternative trials?

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

by JackHCorley on Fri Sep 13, 2019 08:55 PM

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On Dec 14, 2018 4:34 AM Pam21 wrote:

On Jul 24, 2018 3:51 PM jvdb1 wrote:

Dr. Raúl Valenzuela (Pontificia Universidad Católica de Chile, Clinical Fellowship in Neuro-oncology Massachusetts General Hospital). 

Treatment was: surgery, radiation, temodar. After about six weeks on Temodar the tumor continued to grow. Started CCNU+tamoxifen and the supplements Melatonin 15mg/day plus aminocare a10 (18caps/day). That, and some dietary changes (very little sugar, meat or cheese). He's still on a tamoxifen(reduced maintenance dose).

As mentioned in my previous post, the aminocare a10 formula has changed and the new fomula has no antineoplastins(A10). But you could check on Phenylbutyrate.

Hello,

Thank you for this information you shared. Do you know which hospital Dr Raul Velenzuela works out of? Was it in the US or Chile that your father-in-law worked with him?

Thanks for your help.

Palma

Good luck and much hope to you. My friend Jack was diagnosed in June 2018. He has glioblastoma with the unmethylated marker. Any information related to this would be appreciated. Lorraine

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

by drowen on Fri Sep 13, 2019 09:32 PM

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We haven't reported in in a while. My son was had a GBM diagnosed at New Orleans and MD Anderson in 2005 with a GBM. Rad'n Tem. and experiemntal treatments with Avastin/CPT-11 and no reoccurance at primary site. One is never out of the woods but great hope. It is no longer a death sentence. There are numberous new treatments never give up. He is well and outside of being baldis a great looking 50 year old. 

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