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Wednesday, May 31, 2006

Desmoid Tumor Foundation Fundraiser June 1st

All~ I am crossposting this email from my sister (I hope it is ok with her, I told her I was going to). It tells alot about her condition in her own words. Desmoid tumors can strike anyone, at any age. Although they are benign, they are invasive. I realize there are lots of pleas for donations online, but this is another worthy cause. Currently, there is no Desmoid Tumor Research facility in the United States. You can donate online (a link is provided at the bottom).
I have made my donation.

Subject: First Annual Fund-raiser for Desmoid Tumors!!! june 1st

As you know, I have a Desmoid tumor that I have been dealing with since I was 23. There is no cure -- most treatment is surgery or amputation, then chemo and radiation. They do not know if any of this really works because about 75% of desmoid tumors come back in the site of the removed tumor.

My tumor was removed 15 years ago then grew back after I had kids. It was treated with chemo to stop the growth. I have a MRI each year to see if it changes. Surgery is not an option anymore due to the muscle and tissue mass taken out from my right hip/leg area the first time. If it grows again I will have to possibly have my leg removed. I am one of the lucky ones; I can pretty much go one with my life until it changes. It slows me down but does not stop me. Some cases are not that lucky. Some people get them in the neck, which can cut off air supply. Other countries do not have great technology that we have and doctors just amputate legs, arms, etc. Children get them, too and with their hormones they usually grow quickly.

If you can donate anything it would be greatly appreciated, or know of a business that would donate, please send them the information below. It is not a well known disease or one that a celebrity endorses, so we are regular people trying to find a cure. The e-mail below I have forwarded is from the desmoid research clinic in New York that I have been waiting years for someone to start.

Dear Desmoid patients, family and friends,
Just a quick update on DTRF activities-
We are excited to announce our First Annual Fund-raiser on June 1st! If you live in the New York area (or plan on visiting) we encourage you to attend and support the foundation and it's quest for a cure! Please revisit ( for details and reservations.

Also we have received an INCREDIBLE GIFT! A very generous donor has offered to match all donations to the foundation received by July 1st. We have already received letters of intent from several research institutions that are interested in finding a cure for desmoids. We need your help in funding this research! We are all in this together.
Thank you in advance,
Marlene Portnoy


Anonymous said...

I have just been diagnosed with a Desmoid tumor in my lower abdomin (6/16/08). I had never heard of it before so I am doing some research. I would like to email you privately if possible for more info. They want to remove the growth and start me on something such as Tamoxifin or Clineral. My email address is:

Anonymous said...


I lost a husband, a brother-in-law and a son to a Desmoid. I have an 18 year old grandson who in 2007 was diagnosed with a 35 lb. desmoid in his stomach (he had his colon removed at 12 due to FAP). He died 4 times due to blood loss on the operating table while removing his tumor. But he was dying due to all the damge done to his internal organs. After several months and just 10 days before he would have died, he received a 5 organ transplant. One year later he is doing well, but facing 2 more surgeries. I don't write this to scare anyone, but we all need to do whatever we can do get more research done on this type of tumor. I just attended a benefit for an 18 month old little girl who was diagnosed with a very large desmoid on her back at the tender age of 4 weeks. At 5 months the docs removed what they could, taking half her back with it. She is too young for radiation, and cannot have anymore surgeries on this tumor. All her mother can do is wait. Desmoids are caused by a mutation of the APC gene and is genetic. Be vigilant with your bodies, watch for any new symptoms and report them immediately. If you feel your doctor is not doing enough or very knowlegable in Desmoids, look for another. If I had taken a second opinion on my son, or if his doctors would have taken the second doctors phone calls, I would still have my son.

Debbie said...


I just wrote about losing many family members to Desmoids and my grandson's experience with his desmoid. I have dealt with this disease for 35 years, if anyone would like to email me regarding my experiences, please fell free -

Anonymous said...

Hi everyone,
I am a transplant coordinator for small bowel transplant at the University of Illinois Hospital. We have been getting referrals from surgeons who thought that thier patients needs an SBT because of the desmoid tumor afecting the small bowel. Our surgeon Dr. Enrico Benedetti has been succesful in removing the tumors hence, there is no necessity for a transplant. These patients were told by their doctors that there is nothing much they can do for the them. If anybody is in this situation, you can call me at 312-413-9489 or e-mail me at We would very much want to see if their is anything Dr. Benedetti can do for you.
Sincerely yours,

xenia Lopez, RN
Yniversity of Illinois Hospital.

Arno said...

Hello, my name is Arno and Im comming from Holland. My girlfreind 30 years old has a desmoid tumor in her belly! They could not remove this tumor, because he sticks to much against the little darm (I don't know the word in English) If the doctor should remove the tumor it was to much risk because otherwise she was bleeding to death.
Now she is getting the medicine Glivec but on 18 sept 2008 we will know if it works to stop the tumor. We would like to know if somebody can look at her file to check if maybe somebody can remove this, because herr live is damaged. We know that it is difficult.
Thanks for a reply

robin said...

Please do visit the desmoid tumor foundation at

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