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Fighting a Rare Bladder Cancer/

3 years 10 months ago #48286 by fighterm
I don't think that organic food can be harmful. But there is no proof that it can be curative. sometimes tumors in young people go away by themselves just because they are young and strong. When I was about 30 yo I had an enlarged lymph node that was most likely a low grade lymphoma. my doc told me to wait and watch and it disappeared by itself in a year or 2. i did not have any treatment until it returned 12 years later in exactly the same spot in the form of a very aggressive lymphoma.

Here is some interesting paper
http://www.ascopost.com/issues/october-15-2012/antioxidant-supplementation-in-patients-with-cancer-is-it-safe-and-effective.aspx

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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3 years 10 months ago #48285 by Jayne
Hello all, sorry for the lapse in response.. been really busy here. This rare bladder cancer stuff is fairly all consuming. Sara Anne, I appreciate and respect your insight. Like you, my husband is also a scientist. He holds a Ph.D. in superconductivity physics with a specialty in tunneling. Thankfully he also has a grand sense of humor! I have an Ed.S. in instructional design with a concentration in research and measurement. We both love us some data! And yep- the info presented in the book, Radical Remission is not empirical. Not one little bit. That said- there is just something to be said about blind faith. I'm one of those "well behaved" believers- I don't press my deep faith and spirituality on folk (sex, religion, and politics in my view are best left to rest within one's own psyche and certainly are not cool topics for intimate dinner parties...or list servs like ours) That said, I absolutely believe in miracles. I do believe people can reverse their cancerous tumors by completely following the 9 steps in the book AND relying on excellent Western Medicine. This week just by happenstance I met a technician in the APPLE Computer store who was in Hospice in 2009. He had mets in his liver and lungs. He was given 2 months to live and told to brace himself and enjoy his family. He turned that bad boy prognosis around and is in year 6 without a tumor in sight. I then met a gal in Costco (those big box stores ARE really cool!). I was buying organic coconut oil. She was also. Swears by it. She said by going organic, finding a deep sense of spirituality, and meditation, she reduced a grapefruit sized cancerous tumor in her chest to nothing. Poof- gone. Baffled her medical team. I am not saying that Western medicine ain't great (I so love antibiotics...and CT scans... and surgery to remove cancerous bladder tumors because in less than a month Mick's bladder and prostrate will be removed). I am saying that the power of the mind and spirit are powerful. And my scientist hubby and I are going to follow both paths- traditional medicine and complementary therapies. We will keep the thread posted on our journey. And yes- I absolutely believe that people can spontaneously heal and that radical remission is a reality for some. With a tough diagnosis of a rare cancer- what does one have to lose by embracing things "far left" of the norm? In the meantime, Mick and I remain cheerful and optimistic. Surrounded by 5 of our 7 kids (one has wanderlust in Chile and a second calls a distant state home) we will have a "bye-bye bladder party" We will take little pink balloons, fill them with water, and toss them off our deck. Gotta keep the humor. Gotta keep the faith. Science is fabulous. And in my view, so is faith. For me, it is the perfect blend. Fight we will. Believe... we must. We have 7 kids and 2 darling grand babies cheering us on... Wishing everyone on the thread much success in their treatment. Blessings, Jannie

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3 years 10 months ago #48197 by fighterm
I agree with Catherine that mental health is very important. What gave me my peace of mind was reading about new research. I realized that some real breakthroughs were achieved in the last couple of years. All these markers that I mentioned in my previous post I put them for you to check on new clinical trials. In the category Articles of interest you can find some information about them. Best wishes to your husband.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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3 years 10 months ago #48192 by CatherineH
Hello Jannie... I want to add my welcome to our forum. I am sorry to hear about your husband's diagnosis. It sounds like he has a good medical team and is going into the radical cystectomy with a positive attitude which will take care of his physical medical issues.

There is another side of having bladder cancer, or I suspect any other type of cancer, and that is the emotional and mental havoc is wreaks on your spirit. The importance of alternative practices that can help bring emotional healing and inner peace cannot be overstated. I think that is where the alternative medicine can be invaluable.

Over the past five years since my diagnosis, I have had difficulty coming to terms with it, the fear it induces in my day to day life, emotional state, etc. I will say it has gotten further away from my immediate thoughts as time has passed, but is never completely gone since I tend to be anxiety prone. I have not tried reiki but have done Myofascial Release Therapy which helped tremendously with both anxiety, physical pain unrelated to bc, mental relaxation, as well as helping with chronic insomnia. I tried to eat organic as much as possible even before bc, and that will continue with even more emphasis now for better general health.

While I don't personally think it is possible to "reverse" cancer that has already occurred in the body, I do believe taking steps to optimize both physical and mental health is definitely going in the right direction, and may even head off cancers down the road.

My best to you both. Please stay in touch and let us know how things go in the weeks and months ahead.

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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3 years 10 months ago #48191 by fighterm
I second Sara Anne on how to take any suggestions from different books. I am also scientifically trained (a biochemist). I read only scientific papers published in peer-reviewed journals. The simple explanation of cancer is this. Our cells normally divide to maintain tissues. During cell division the DNA is exposed and can mutate. Mutations are random. If you have carcinogens in your blood (for example from smoking) some of your cells will be more prone to mutations during cell divisions. Most mutations cause cells to self-destruct, but some can cause cancer. Cancer cells have many different mechanisms to evade our immune system or cell-destruct. They over-express the CD47 marker which gives out the "don't kill me" signal to macrophages of our immune system. They express also L1 peptide that interacts with PD1 marker on T lymphocytes and disables the T lymphocytes. They express the cxcl12 marker that causes their movement to remote sites (metastasis). What is needed now is more research on the cancer cells and especially on the cancer stem cells in order to target them specifically without harming good cells. I don't think any special diet can kill cancer. Just take care to stay away from carcinogens because they can always make any cancer worse.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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3 years 10 months ago #48189 by sara.anne
So sorry to hear about your husband's diagnosis. Facing major surgery, you have a lot on your plate.

There is nothing wrong with living a very healthy life style, but going overboard does not make a lot of sense to me. (You have to remember that I am scientifically trained and this definitely molds my point of view.) Whatever caused the cancer (and we have NO IDEA WHAT THAT WAS) happened decades ago. So while eating a healthy diet and adopting a healthy life style are always good for us, it cannot reverse what started years ago.

Also, in my opinion, the author of this book does not have any credentials for evaluating scientific data...in fact, the book is completely anecdotal and does not contain any scientific data. So I would be cautious in what I take from the recommendations.

That said, you need to do whatever you feel is appropriate in your case. I am pleased to see that you are not rejecting the conventional medical treatment recommended by his doctors.

We will be standing right by your side as you go ahead.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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