Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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

by Keto14 on Tue Jul 24, 2018 02:58 PM

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On Jun 22, 2018 8:50 PM jvdb1 wrote:

My Father-in-law has survived GBM for over 15 years now, was diagnosed in December 2002. 

He had surgery, radiation, temodar, was given up on as the tumor grew during chemo. Found another neuro-oncologist who gave him CCNU and Tamoxifen. Also took 15mg of melatonin and some other supplements.

He's now 67.

Which doc and what other meds or supplements was he taking?

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

by jvdb1 on Tue Jul 24, 2018 03:51 PM

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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.

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

by springles on Thu Jul 26, 2018 02:11 AM

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On Mar 06, 2018 2:12 AM michaeldiane wrote:

I have a similar story only I have survived 50 months since my surgery. Operation, radiation,three years chemo, now I am not on anything I merely do MRIs every four months. My wife and I celebrated 50 years in October and are really blessed to have had this time together.. thanks .....Mike

Hi Mike, 

Your story is motivating.

My brother is recently diagnoised and will be starting radiation soon with Temador.

Did you do anything other than the standard treatments(radiation/chemo) like suppliments or alternate medicnes.

I hope to hear from you.

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

by Frewen on Thu Jul 26, 2018 08:46 AM

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I was diagnosed gum grade4 in 2009 . I’m still here today going for a mri on Sunday on yearly visits. You can live but you have to change the first thing is understanding everybody is terminal but with good help at the right time and being positive can help you through it :)) rob

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

by Broadswordsman on Thu Jul 26, 2018 08:51 AM

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On Jul 26, 2018 8:46 AM Frewen wrote:

I was diagnosed gum grade4 in 2009 . I’m still here today going for a mri on Sunday on yearly visits. You can live but you have to change the first thing is understanding everybody is terminal but with good help at the right time and being positive can help you through it :)) rob
Hello Rob What great success. What do you believe is the secret to that success? Sharing information is vital to beating this Thanks Brian

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

by adiwan on Fri Aug 03, 2018 02:16 AM

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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

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

by adiwan on Fri Aug 03, 2018 11:34 PM

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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.

Hi,

Would request you to kindly share Dr. Raúl Valenzuela's email address as I want to get in touch with him for my dad.

Thanks

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

by sundasnasim22 on Fri Sep 07, 2018 08:31 PM

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On Aug 23, 2013 6:03 PM jcnez wrote:

Hi, just went through the longest two weeks of my life after a CAT scan revealed a massive tumor in my wife Cathy's right temporal lobe. (she is 48 years old) She had been having symptoms (headache mostly) for the last several months which were initially thought to be an ear infection. After much browbeating, our health provider finally scheduled a CT and she was rushed to Lahey clinic in Burlington MA and had a craniotomy on 8/9/13. The neurologist said he got 99% of it, but a week later the pathology came back as Gliosarcoma, which is very rare and aggressive. From what I've read it is treated the same as GBM, but the prognosis is worse. Cathy was released from hospital a mere 4 days after surgery and aside from moderate pain and fatigue, is doing amazingly well.  There appears to be minimal cognitive and little to no physical impairment. Most of her pain I'm told is due to the massive amount of swelling which caused a "shift" in the centerline of her brain. The tumor was huge, about the size of my hand, and I was told if we had not gotten her in when we did, she would have died within hours. (steroids are what saved her that day, I could literally see the change in her once she was on the IV) Now we are waiting for the radiation/chemo phase which starts the day after Labor Day. Six weeks radiation in conjunction with Temodar. I cannot express the gratitude for what all of you have been posting on this site, as everything I've found up to now has been horrifying regarding this disease. I know we are now approaching a very tough road......at this point I am just grateful that she is alive and that she is still "Cathy". To be honest I am amazed at how well she is doing and I'm dreading what lies ahead. I know that any "long" term survivors of brain cancer have said that diet is key (as well as attitude!) and certain supplements help, but we've been told not to change anything regarding diet until radiation/chemo is done. (at least first phase) At this point i am still very emotional, but we have been getting amazing support from friends & family.  I just wanted to reach out to people who've been there....thank you all.  john

This was a really positive message - thank you.

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

by Rick_North on Sun Sep 09, 2018 01:23 AM

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I walked into the local hospital on my birthday Dec 28th '17 after having fallen too many times to count. Had a ct scan that showed a mass in my brain. They drove me to a bigger hospital and had an mri, turned out after removing and doing a biopsy on it that it was gliosarcoma the deadlier cousin of gbm. 

After chemo, radiation and just 2 or 3 cycles of temodar it was back. I waited 3 weeks!! before they started the avastin during which time i lost control of my right side to the of being in a wheelchair.

i have been mostly stable since starting the avastin besides the seizues. The drs say there are a few new treatments that would become available if i survive the next few avastin treatments but they wouldnt say what they were.

I am just hoping to make it to my next birthday.

Rick

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

by masteele38 on Wed Sep 19, 2018 07:58 PM

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Hi there!  I am sorry to hear of your dad, but keep hope - God is in control!

My dad is doing well - he recently finished his 6 weeks of radiation/Temador and is on his 4 week "break."  

He is following a very strict therapeutic Keto diet under a nutritionists care.  I highly suggest reading Keto for Cancer by Miriam Kalamian.  He sticks to a high fat, low protein/carb diet - no sugar and very little dairy. He drinks bulletproof coffee in the mornign and does time restriced eating - stop eating at 6pm and then don't eat until 10am the next day.  This gives the body a break to digest properly and heal. My dad was definitely overweight to begin with and lost weight initially but now he is at a good healthy weight and exercising daily!  Excercise is very important - even if it's just a daily walk.  

He is working with several different Naturopaths on supplements based on monthly blood tests.  He is on Bowellia, Curcumin, Black Cumin Seed Oil, Different Mushrooms (Coriolus - Maiitake, Long Tail), Cayenne, Zinc, Melatonin, CoQ10, Vitamin D and B12 (he was low on these levels), MK7 to help Calcium absorb into bones, DHEA, Probiotic.

He also is taking the Care Oncology Protocol - a combination of different off label drugs.  Definitely recommend looking into this!

He takes 2-3 organic raw garlic cloves every day.  Peel and chop then let sit for 15 minutes before taking with water. He takes CBD/THC as well and is taking the Banerji Protocol as well.

We are looking at adding more, but right now he is thinking about whether he wants to continue the Temador (higher dose 5 days on/23 days off).  Ultimately, we truly believe God is in contol and we are trusting Him as all of our days are numbered.

Good luck and prayers of healing for your dad!

Ashlie

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