Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

cdnis5cstudent,

The utilitarian philosophy of putting people down went out of style with the collapse of the Third Reich nearly 70 years ago. Humanity has since considered the errors of such a philosophy and has concluded that people cannot be treated the same as animals to be put down; the ethical implications of doing so are just too severe. Where would we stop?

You might want to run an ethics upgrade on your head and heart and catch up to the year 2012. And wherever you are a "student", I would run quickly from whatever outdated and dangerously unethical ideas they are teaching you.

My 63 year old dad seems to be doing well post surgery, Radiation with Temozolomide. He is now on maintenence Temozolomide. He's on the 2nd month out of the prescribed 6 months.

He's been fine except for being a little tired this summer. We live in South India which gets pretty hot. I'm doing fine seeing him alright...unable to relate the prognosis to 'life at the moment'. 

I normally won't worry un-necessarily...but as the months go by, i'm starting to feel anxious. The radiation onchologist gave my dad 2 years...and 5 months are up already.

I know that a majority of people in this forum are from the US where clinical trials etc are available. Someone please tell me whether there are long term survivors who did not undergo any other treatment other than the RT and Temozolomide/ and other conventional treatment.

Any long term survivor from India? I really dont know what to expect... anxious.

-Priti

Hi Priti,

Forget the statistics. Everyone is different, plus doctors are specifically trained to give the worst case scenario. That way, if it happens, they look like they know what they are doing and if the patient lives beyond that date, they look like heroes. The date is pretty meaningless, other than as an indication of the danger of the disease.

I know of a couple of long term survivors who went through all the typical medical treatments (radiation/Temodar), but they added high grade curcumin to their diet. Since you are in India and I presume your father, too, you should have no trouble whatsovever getting a high grade of curcumin for him. One GBM survivor of 5+ years has been taking curcumin daily for 5 + years and attributes her beating the odds to the curcumin.

There is considerable research out there in the anti-cancer properties of this ground up root plant. They do know that curcumin induces apoptosis (cancer cell death). It is also a potent anti-inflammatory and immune system booster. No studies so far have shown any interference with chemo.

In terms of dosage, a NO I know that was trained at Mayo has recommended to a brain cancer patient 5 grams per day at his weight (82 kilograms/ 180 pounds).  You can calculate what your father should be taking from that and discuss with the doctors to make sure they are on board. Much research into curcumin is going on in India, so I would be very surprised if they even hesitate a minute to endorse its use.

I understand that to make the curcumin most bioavailable to the brain, one should take it with a small amount of cold pressed (organic) flaxseed oil and a bit of black pepper (for the pipperin).  I have to tell you that this Spring I had a lung cancer scare and started taking the curcumin. Turned out to be an infection, which the curcumin really helped against. Though not taking curcumin for this reason, I have been noticing considerable positive cognitive effects, so clearly the curcumin is working in my brain but I am only taking 2 grams per day and I only take it with a little Vitamin E oil. Seems to work well.

All the best to you and your father,

Jana

Hi Jana,

Thank you so much for taking the time to write. I read your post just before i headed off to collect dad's latest and first post surgery/RT MRI report.

The doctor gave me wonderful news. He said that there is no trace of active cancer cells ie., macro cancer cells. And that his prognosis is much better now. Looks like the surgery and RT (with the hand of God) has  done some wonders! And oh... he did say that such findings would mean that he could just fall into the 10% group of long term survivors. I'm just so grateful to my God!

Thank you for the info on curcumin. We do use tumeric in our cooking and for home remedies. Guess grandma's cures were wise indeed!

Thank you once again.

Priti

Hi Priti,

This is just fabulous news. I am thrilled for you, your father and your family.

They say in this brain cancer business that whatever a person was doing when the doctors said they showed no evidence of cancer, they should keep on doing. So, you might want to have your father keep eating and living the way he has been.

And of course, the prayers for your father's health need to continue in intensity and sincerity, too. I have no doubt that any family's success in battling this beast are attributed to God, excellent medical care, a positive attitude and positive actions (like diet, supplements, etc).

Thank you again for your posting with the wonderful news.

All the best,

Jana 

Namaskar Priti,

In October 2006 I was diagnosed with a grade IV glioblastoma multiforme malignant brain tumor.  I had surgery, radiation - and I remain on Temodar pills five days each month.

The doctors told me that I had as little as 3 months and the maximum of 18 months to live.  They suggest I plan on 12 months.  That was five and a half years ago - and I am still doing fine.  The Temodar does cause me to be a bit tired so .... I take a nap.

I have read of people with this same diagnosis who have live 10 or 20 years - and are still alive.  So everyone is different.  If a doctor tells your father he has 2 years, it is just a guess.  I think doctors harm patients by guessing about longevity.  They don't know. 

Tell your father to live his life as fully as he can and don't worry about someone else's speculation. 

All the best,

Gregg

Hi All,

I was diagonised with GBM in March this year. After that it has been a hell of a ride till now. I had a surgery, in which the doctors took about 98% of the tumour and then RT/chemo for 6 weeks. 

And now Im in the 2nd cycle (of 6 cycles) of the Temodal. As of now, I am having a normal life and going to office as usual (I was in home for 2 months during the surgery/RT/chemo and just got sick being in home). I am not really thinking into the survival rates, statistics etc. They always talk about average survival rates and I believe that Im not an Average but much above it.

I must also thank to my lovely wife, who had been a staunch support for me during these 3.5 months. She is such a strong woman that despite being pregnant she used to run around the hospital and took care of me, while I was in the hospital and at home. 

I feel that I definitely have the will power to overcome this dreadly disease and show to the world what I am capable of, with the support of my wife.

Vijith, India

Hi,

My youngest brother 25 yrs old has a very large tumor in his brain that dr says inoperable.He just started his chemo this week and any elp about the natural therapies you took would be very helpful. 

Hi Lorie33,

I have a son, 28, diagnosed with a "dangerously large" malignant tumor in his brain who is now doing extraordinarily well with a program of natural therapies that he uses in conjunction with conventional medical care (surgery, radiation, chemo). As we realized that brain cancer is something of an elite cancer, we are throwing every bit of artillery at the disease and it is working.  In fact, he is right now showing no evidence of cancer and is out there enjoying life and heading for the beach with his buddies.

I have tons of data, well organized, that lays out what my son is doing in an Excel spreadsheet that I can send you. My e-

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I do not have the following data in my spreadsheet, but I think you should know about two techniques where doctors are able to stomp out inoperable tumors. One technique is by the insertion of an electrode-like device through a small (pencil width) hole in the cranium and into the tumor. They then basically microwave the tumor from the inside out (with the assistance of interoperative MRI).  I saw a news report on this technique about 4 to 6 weeks ago, so it's extremely new.  Another technique for stomping out inoperables is also new, but possibly only experimental at this stage. Doctors are injecting the chemo avastin right into the tumor. The tumor then shrivels and the dead clump of cells are reabsorbed by the body. These techniques may or may not be appropriate for your brother, but the point is that medicine is leaning fast forward into finding ways to deal with tumors that have to date been considered inoperable.

Whatever you and your brother choose to do, never ever give in or give up. Do not accept ANY seemingly insurmountable barriers (e.g., labels like "inoperable"); do not accept side effects, ask questions and require answers. I'm not saying you or your brother will beat every challenge, but many, many can be moderated or even eliminated.

My prayers are with you both,

Jana