Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

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

by hksal on Sun Sep 23, 2018 08:18 PM

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Rick, you can do it! I am three years out from my initial GBM ressection surgery. Keep a positive attitude, eat well. Keep your body strong so it can withstand the treatments that are going to save you. Find reasons to laugh and be interested in life. You've got this. xx

RE: GBL Stage 4

by yjner on Fri Oct 12, 2018 07:51 AM

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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

 

Curcumin (6,000 plus mgs) - which brand and how many capsules?

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

by Geride on Thu Oct 25, 2018 03:33 PM

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My husband had gbm4, had the surgery, could not tolerate chemo and had some radiation.  He was considered terminal at that time.  Our primary Dr. recommend Fred Eichorn at NCRF. He has a supplement called Cellect and his diet is eat like they did in the 1900's, no preservatives. My husband surved the cancer all of his mri's and pet scans showed no evidence of cancer. Unfortunately he died due to doctor error with a medical problem not linked to the gbm.  He survived 22 months and was doing great.

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

by Pam21 on Fri Dec 14, 2018 04:34 AM

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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.

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

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

by PriyankaBansal on Sun Feb 10, 2019 03:50 AM

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On Feb 16, 2017 9:18 PM LucyGBMSurvivor wrote:

Hi Jocelyn.

I only just now saw this post & its replies, and this site.

I realise it is 5 years since you posted, so am unaware of your sons situation, and I apologise in how late my reply is.. I hope it can be of some help.

I am a two times survivor of GBM Grade 4 Cancer, My first diagnosis, followed surgery in August 2013, which was a year after related symptoms (of Epilepsy, caused by the GBM Cancer) & a misdiagnosis of having a much less harmful Cavenoma (than GBM). I eventually had a referral for 2nd opinion to an excellent neurosurgeon, who was also a specialist on epilepsy, cavenoma's AND brain tumours. He said my MRI scan indicated an 'atypical' growth, compared to Cavenoma's & recommended surgery asap, mentioning it could be a tumour.

After surgery & diagnosis with Grade 4 GBM, I was advised to also begin Chemotherapy & Radiation a fortnight following my quick (5day) recovery from brain surgery. I took this route, knowing nothing more of approaches to Cancer, alternative routes to preventing & treating it to the allopathic (medical) approach - of cut-burn-poison (surgery, radiation & chemotherapy).

However, I did quickly start purchasing as many books on Cancer prevention & treatments (to begin researching deeply), and was also under a well known integrative Cancer specialised doctor - Rosy Daniels, who provided an anti-cancer dietary & powerful (antioxidant- phytonutrient) suppliment protocol.

That was the very basic and start of my learning about prevention of Cancer, treatments outside the medical remit, and also how very poor survivor odds are given statistically, in Medicine, for GBM & for the Chemotherapy (usually Temozolomide, but not exclusively), and Radiation too, respectively.

I DID have both Chemotherapy & Radiation, but since my incredibly intensive and in-depth research and my more more well informed & empowered health awareness (well beyond just the medical 'disease-only' focus), over the last 3 1/2 years, I have learnt, and benefitted from so much research, & even beating the poor odds of 12-18months average survival (in 97% of patients), to beating 1st GBM till reoccurence after 2 3/4yrs (unusually long survival for GBM, but I know why, after further research, and sadly this includes the fact in MEDICAL literature- both Chemo & Radiation 'therapy' are listed in all medical journals as both 'Cytotoxic' & 'Carcinogenic'- i.e CAUSE Cancer, and encourage it to return).

I dont have enough time at present to share all I've learnt about beating Cancer (in general, and in depth), and of how many of my friends who had verious Cancers have beaten medical odds- but further than this, have proven Oncologists (who've prognoses them as dying in 3 weeks/2 months etc)  wrong, and are now very healthy, from the same research literature I've read on fighting & beating Cancer, and are alive & well- now several years after their poor prognoses.

I I have ofcourse also researched and found specific research studies that specifically show certain antioxidants/vitamins etc that go through the blood brain barrrier - to destroy Cancer.

The whole protocol on fighting Cancer, HARM FREE (rather than increasing toxicity in an already toxic Cancer body, and incrasing inflammation- in a alrady highly imflammatory body, and its cells (Chemo & Radiation) is very detailed & complex, so I cant write it all here, but am happily to share for anyone who is interested, when I can soon.

Im aware there will be afronted hearing this, however, the research on Oncologists refusing Chemo & Radiation as treatment for themselves, if could choose, showed 95% of them saying they would NOT take these 'treatments' themselves, (due to how cytotoxic and carcinogenic they are, how likely they are to cause or bring back further cancer, how v.low "" target="_blank" rel="nofollow">http://v.low " target="_blank" rel="nofollow">v.low probability of curing- hence us all knowing there IS no cure, in mainstream medical, yet), and due to the harm it causes- havoc it further wrecks on an already immune suppressed body).

It may also interest you to know that my Oncologist said I was 'one of her few amazing patients', kindly, due to my already having doubled survival time, compared to statistical averages on only 3% survival after 3yrs of GBM (since diagnosis), and due to all Im doing, and her seeing me as 'looking so healthy'. She told me to 'keep on doing what yr doing, as its obviously working'.

I DID have GBM brain surgery again (but no chemo & radiation) 3 weeks ago, was discharged in LESS than 48hrs post surgically, (when the average for recovery from brain surgery is 6 weeks), and feel in the very BEST health I've ever had in my 44yrs in this life. 

I have worked very hard at prevention, and also health promotion- which has no doubt improved tenfold, and researched intensively on the last 4 yrs. I believe this, and my determination- due to the last 2 GBM Cancers, AND 10yrs of extreme medical negligence causing near death before, and nr death (due to 10yr wait for emergency surgery, after 10yrs entire GP practice wrongly dismissed my correct diagnosis & request of referral to an endocrinologist (for later found rare condition.. after outside intervention -long story, caused a very v.near "" target="_blank" rel="nofollow">http://v.near " target="_blank" rel="nofollow">v.near death (coma pre eventual surgery) AND hugely promoted my later (1st) GBM Cancer (negligence caused insulin Groth Hormone-1 - for 10yrs, which greatly increases Cancers, and also 'learned helplessness' (of knowing yr dying, as get more ill, and ignored) - which also is worse stress for promoting Cancer..

I learnt more of what caused my Cancer, and my secondary GBM rediagnoses.. but this is anoter story.

If anyone needs to know about the research on GBM preventative suppliments- such as tangeritin (antioxidant, that gets thro blood-brain barrier), Vit.E (fights all brain cancer), Boswelia (Frankinsense) - specifically fighting Brain Cancers, and the many other ways to fight & reduce probability of Cancers - there is so much, and explanations of how they work (scientifically) - that any integrative or functional medicine ( & Cancer specialised) Doctor, or rare 'radical remission' patient, as Im referred to as in medical language, can explain, if they have the time....

Lucy please help us with my brother’s case... he was diagnosed with AAA , had a surgery in 2016 accompanied with chemo and radiation... his tumour relapsed after 2 years and this time radiation and chemo din’t work for him... so he has been deteriorating since then and is in a comatose kinda situation and is feeding through ryle’s tube... please suggest what all can be done in a situation like this to help... thanks Priyanka

RE: Looking For Glioblastoma Survivors Stage 4

by PriyankaBansal on Sun Feb 10, 2019 04:02 AM

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On Feb 21, 2010 1:29 PM SandraLC wrote:

I have been researching cancer for the last 15 years as my husband side has had all types.  I have 2 children and wanted to be able to protect them.   Several years ago I finally found what I was looking for.  I have a few testimonals of those that have glioblastoma and are survivors for years.  Several at this point whose tumor is shrinking.  If you are interested in the information please contact me.

Sandra

Lucy please help us with my brother’s case... he was diagnosed with AAA , had a surgery in 2016 accompanied with chemo and radiation... his tumour relapsed after 2 years and this time radiation and chemo din’t work for him... so he has been deteriorating since then and is in a comatose kinda situation and is feeding through ryle’s tube... please suggest what all can be done in a situation like this to help... thanks Priyanka
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