Treatment hasn't been working for Desmoid Tumors any suggestions

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Treatment hasn't been working for Desmoid Tumors any suggestions

by fyhrie on Wed Jun 28, 2017 06:59 AM

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When I was 17 I was diagnosed with familial adenomatous polyposis I had my colon removed and a J-pouch created. A few years later I found a lump on my lower abdomin. I went to have it looked at and found out I had 6-10 desmoid tumors scattered my abdomin. Some are on my small tinestine, wrappe around my ureter, behind my stomach etc. In the past 5 years I have also been diagnosed with Gardner Syndrome and Hoshimotos disease. When I was first diagnosed we tried waiting a few months with no treatment to see if the tumors were stable but they grew, I was put  on gleevec/Imatinib for a year and the tumors continued to grow and a new one formed, at the beginning of that year span I had a cryoblation done to 2 tumors because of the amount of pain those tumors caused and at the end of the year span one of the 2 began to grow again. I am now 23 and for the past 6 months my pain has escalated from maybe once a month to once or twice a week to daily and some pain lasts for hours,  I also just started taking Nexavar/Sorafenib for 3 months ago adn find the pain is worse when I sit then stand or walk. Does anyone know anything to help the pain and stop the tumors from growing/ keep them stable?

RE: Treatment hasn't been working for Desmoid Tumors any suggestions

by ronbudro on Thu Jun 29, 2017 04:43 PM

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There probably anything more powerful than greens I am supporting a young woman in Bhutanwho has bone cance. She changed her diet to vegan with many green veggies. 6 weeks later her doctor told her he never seen anyone Gain weight and look healthier while getting Chemo. You should cook hard beans and eat daily with sone Organic green veggies. Especially leafy greens. When you add organic corn organic whole grain wheat And some other foods they become a complete protein. So no dairy, no sugars what so every and no sweeteners of any kind. No meat of any kind. You do not want to feed a disease. No preprocessed foods what so every. Only whole organic foods. Take Turmeric and magnesium and D3 Also use black pepper when you eat your Turmeric as to Get it into your body. This is a start.

RE: Treatment hasn't been working for Desmoid Tumors any suggestions

by fyhrie on Fri Jun 30, 2017 01:32 PM

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Thank you, I will try it

Reply: Treatment hasn't been working for Desmoid Tumors any suggestions

by gfranco1 on Tue Jul 04, 2017 10:27 PM

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So sorry to hear of your struggles and progression!

My recommendation is that you have consultation for surgery at this time.  I can highgly recommend Dr. Samuel Singer at Memorial Sloan Kettering in NYC.  He saved my life when UCLA Sarcoma program cancelled my surgery 2 days before and left me with no long term options after I had been with them for over 1 1/2 years doing chemo treatment and options with possible surgery. When it came down to it - UCLA HealthCare Systems DID NOTmanage my condition/treatment well enough!  And left me hanging.  I sent myself to second opinion at MSK just in time.

There is a different attitude here at Memorial Sloan Kettering.  They work overtime to do what needs to be done to save a life.  My surgery was over 11 hours into 3 am.

Please follow-up with MSK asap to get direction to your condition.  Best wishes and many prayers for a long and fulfilling life!

GFranco

RE: Reply: Treatment hasn't been working for Desmoid Tumors any suggestions

by fyhrie on Wed Jul 05, 2017 02:54 AM

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Doesn't surgery have a low success rate? My doctors won't do surgery cause it creates more scar tissue and I have a lot of tumors.

RE: Reply: Treatment hasn't been working for Desmoid Tumors any suggestions

by gfranco1 on Mon Jul 10, 2017 06:07 PM

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Desmoid tumors are related to sarcoma tumors.  I had one in my first recurrance.  I wold suggest to get the opinion of the best Oncology Surgery center in the world Memorial Sloan Kettering.  Second opinion is very important.

UCLA Health told me they could not do my surgery and I had everything done that I needed in surgery 2 weeks later at Memorial Sloan Kettering.

Please think and act outside the box.  That is where you will find success.  Dr. Samuel Singer is your guy.

Best wishes and prayers for you!

GFranco

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