Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

928 Posts | Page(s): Prev 12...88 89 90 91 92 93 Next 

RE: GBL Stage 4

by Bobby19 on Thu May 24, 2018 07:53 PM

Quote | Reply

On May 24, 2018 7:24 PM hopeful1109 wrote:

Did you have to figure out the supplement regime yourself or onconlogist provided a specialty expert/nutriotinist?

You may want to see a naturopathic oncologist. I have visited several and I'm currently taking Melatonin (20 Mgs), Curcumin (6,000 plus mgs), Lions Mane and Turkey Tail mushrooms ( 8 capsules), LDN, Boswellia, Fish Oil, and CBD 50/50 THC combinations. None of my doctors know wht I have survived over 38, but they all say to keep doing what I'm doing.

Living with brain cancer has taught me that  I may never be cured and that I may die sooner than I anticipated, but in the meantime,  I’m living with a heightened sense of gratitude, preciousness and love. The impermanence of living with death on my shoulder can be scary, but continuously overcoming that fear makes me too strong for fear, too noble for anger, too large for worry and too happy to permit the presence of trouble.

I now have a tendency to put a smile on my face, laughter in my heart and maintain an optimistic and courteous outlook towards everyone and everything, including my brain cancer. Having gratitude as a prominent personality trait initiates what researchers call  an “Upward spiral of positive messages,” which I believe can be curative. Be well, 

Bob

 

RE: GBL Stage 4

by Broadswordsman on Fri May 25, 2018 04:03 AM

Quote | Reply
Hello again Here it is most unlikely for an oncologist or neuro-surgeon to recommend any supplements. There are other clinic type places that offer private services to prescribe re-purposed medicines. I read widely, including the book by Ben Williams, a long term GBM survivor, “Surviving Terminal Cancer” and the book by Raymond Chang, “Beyond the magic bullet”. I found the M.D. Anderson app, “about herbs”, a useful cross-reference. From all of my research and reading, I came up with a battle-plan introducing each supplement, all non-prescription, incrementally so that is there was any reaction, I could step back. By this process I ceased melatonin. All of the additions are because there is evidence that ea h works, not just a mad-cap collection of supplements. Alongside this I started the Banerji regime, see You Tube. It may do nothing, but it is inexpensive from a homeopathic suppplier. Who knows what works? No-one knows for sure but belief in success has ensured I am here to date. It took a lot of work to get to where I am. Most supplements come from Amazon so no obscure or third world sources. I hope this helps.

RE: GBL Stage 4

by Broadswordsman on Sat May 26, 2018 10:36 AM

Quote | Reply

On May 24, 2018 7:53 PM Bobby19 wrote:

On May 24, 2018 7:24 PM hopeful1109 wrote:

Did you have to figure out the supplement regime yourself or onconlogist provided a specialty expert/nutriotinist?

You may want to see a naturopathic oncologist. I have visited several and I'm currently taking Melatonin (20 Mgs), Curcumin (6,000 plus mgs), Lions Mane and Turkey Tail mushrooms ( 8 capsules), LDN, Boswellia, Fish Oil, and CBD 50/50 THC combinations. None of my doctors know wht I have survived over 38, but they all say to keep doing what I'm doing.

Living with brain cancer has taught me that  I may never be cured and that I may die sooner than I anticipated, but in the meantime,  I’m living with a heightened sense of gratitude, preciousness and love. The impermanence of living with death on my shoulder can be scary, but continuously overcoming that fear makes me too strong for fear, too noble for anger, too large for worry and too happy to permit the presence of trouble.

I now have a tendency to put a smile on my face, laughter in my heart and maintain an optimistic and courteous outlook towards everyone and everything, including my brain cancer. Having gratitude as a prominent personality trait initiates what researchers call  an “Upward spiral of positive messages,” which I believe can be curative. Be well, 

Bob

 

Such a helpful and well-written post. Thank you

RE: GBL Stage 4

by hopeful1109 on Sat May 26, 2018 08:02 PM

Quote | Reply

I agree. 

Any of you have a resource of doctors that are willing to work with cancer patients to repurpose drugs?  Is there a list of network out there?

RE: GBM Stage 4

by Broadswordsman on Sat May 26, 2018 08:53 PM

Quote | Reply
I have changed the heading because I believe we are discussing GBM, glioblastoma multiforme which is always stage 4. Any lesser stage is not GBM. You might consider the Care Oncology Clinic, often known as COC or alternatively, Cancer Options both in the UK.

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

by hopeful1109 on Sun May 27, 2018 04:29 AM

Quote | Reply

Hello.

When you said you backed off too soon, what did you mean?  Should you have done another vaccine?  Was it expensive? Did your husband do the traditional treatment?

Thank you.

RE: GBL Stage 4

by hopeful1109 on Sun May 27, 2018 06:01 AM

Quote | Reply

Thank you by the way.  I'm going to see a naturopathic oncologist here in Seattle next week with my husband.  

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

by jvdb1 on Fri Jun 22, 2018 08:50 PM

Quote | Reply

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.

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

by masteele38 on Wed Jul 18, 2018 05:57 AM

Quote | Reply

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.  

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

by jvdb1 on Wed Jul 18, 2018 02:54 PM

Quote | Reply

Hi! He's still taking a maintenance dose of Tamoxifen, he was on lomustine(CCNU) for 6 months in 2003. He took 15mg of melatonin back then and also AMINOCARE A10, a supplement that had antineoplastins. The supplement still exists but it's now a different formula without the A10 antineoplastins. That said, there's a drug called Sodium Phenylbutyrate and when this drug is metabolized in the body it produces byproducts, which are the same antineoplastons. Phenylbutyrate is inexpensive, it's taken orally as a powder. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4841856/

https://www.ncbi.nlm.nih.gov/pubmed/12241121

Hope this helps, wish you and your dad all the best!

928 Posts | Page(s): Prev 12...88 89 90 91 92 93 Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.