Hormone Therapy For Desmoid Tumor

Iam a 27 year old female who was diagnosed with a desmoid tumor May 2005, I've had chemotheraphy twice....one treatment was methotroxate & vinblastin.....now i'm taking doxil. Neither treatment worked, so my doctor wants me to do radiation, but i really dont know. I've had an oncologist remove my tumor Nov 2006, but it's growing back........I wish you the best and may God bless you. These tumors are life changing obstacles:( It's got to be something for us!!!!!! Good Luck again, Zhathkya

I just have a couple of Questions. My husband was diagnosed with a desmoid tumor Nov 2006 and it was removed Jan 2007, the size of a softball on the inner side of his upper thigh. Now, just about a year later, it is back, almost the same size and a few inches lower than it was last time, it is definitley effecting his muscles and nerves. What is the average rate at which these types of tumors grow? His last one took about 4 years to get to that size! also, has anybody here had a successful radiation treatment? I believe that will be our next step. Please help if you can. Thanks!

Hi, I am new to this forum and have read all the previous posts. I am a 65 year old woman with a second AF tumour in my left forearm. The first tumour grew probably as a consequence of bad fall (like so many cases it seems) and elbow damage about 10 years back. Was diagnosed as AF in 2005 after biospy,MRI etc. Was ressected after 50Gy of radiation. Lost posterior interrosseus nerve and entire supinator muscle. 2006 - 3 x tendon transfers to help with radial nerve palsy and use of hand. No sign of recurrence of the original tumour, but investigation by MR! #3 of failed tendon transfer shows new tumour about that. ?Scar tissue > tumour?  I will be faced with chemo when I next see the surgeon, but I am reading Medical Lit online, and will argue for hormone therapy. Very probably I am deeply progesterone deficient. About to have that tested. And I read of Pau d'arco herbal remedy being useful. (An ancient Aztec bark remedy) Will start that next week. Users say it causes the tumour to react painfully for a while, and brings a reduction in size. My surgeon is happy for me to use all forms of treatment.

I have read some dreadful stories of this lawless disease. I am so sad for the very young stricken with this. But of iitself not terminal usually. Wonderful courage.

 

On 3/27/2008 ramblinrose wrote:

I just have a couple of Questions. My husband was diagnosed with a desmoid tumor Nov 2006 and it was removed Jan 2007, the size of a softball on the inner side of his upper thigh. Now, just about a year later, it is back, almost the same size and a few inches lower than it was last time, it is definitley effecting his muscles and nerves. What is the average rate at which these types of tumors grow? His last one took about 4 years to get to that size! also, has anybody here had a successful radiation treatment? I believe that will be our next step. Please help if you can. Thanks!

Hi,

I had 50gy radiation prior to removal of my AF tumour (in arm, around radial nerve). Surgeon said it was to cook the exterior of the tumour so that it could be identified from OK muscle- actally white stone-ish and VERY hard on the scalpel.- otherwise they would need to cut out more flesh - say 1inch about the tumour.  Two years later another tumour has arrived next door against the radius itself. No more surgery or radiation. Maxed out on radiation and surgery would aggravate it.Chemo is the next step. Look up hormone therapy online for AF... and alternatives - Pau d'arco especially recommended.  Cheers

 Gillian (NZ) 

 

On 8/8/2005 Monetmom wrote:

My child has a desmoid tumor and has had two surgeries that resulted it in growing back each time within two years. We are now considering radiation or homone therapy to shrink the tumor and are interested in anyone who has had success with using hormone therapy to shrink their tumor and how long has it stayed shrunk.

I am not sure with you are still looking for a answer, but my daughter has a tumor in her jaw area, so it would be very complicated to do surgery. She was on chemo for 2 years. The tumor is still there no visible at all. And now she has being 2 years with out any treatment. It doesn,t get any smaller but also doesn;t get any bigger.

Hope I will be able to help some families down the road. God bless you all.

Stephanie,

 

 

It has been a long time and I hope you and your daughter are doing well.  My desmoid is still growing slowly.  I had a baby 5 months ago which triggered it to grow faster recently.  The last message I wrote was about my experience with radiation.  The radiation worked for me at age 12 and I am now 38.  I have lived a very normal life, finished graduate school, working as a highschool teacher, married, house dog one beautiful baby boy.  Now I am dealing with my tumor again which is on my lower left back between my hip and spine.  I am taking Sulindac and after I harvest my eggs one more time for someone else to carry my next baby....I will start hormone therapy.  I go to Memorial Sloan Kettering in NYC.

I hope your daughter is well.

Write to me any time.

Jessica

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On 3/27/2008 ramblinrose wrote:

I just have a couple of Questions. My husband was diagnosed with a desmoid tumor Nov 2006 and it was removed Jan 2007, the size of a softball on the inner side of his upper thigh. Now, just about a year later, it is back, almost the same size and a few inches lower than it was last time, it is definitley effecting his muscles and nerves. What is the average rate at which these types of tumors grow? His last one took about 4 years to get to that size! also, has anybody here had a successful radiation treatment? I believe that will be our next step. Please help if you can. Thanks!

I know this message was posted awhile ago but I really wanted to answer this question for you. I am guessing by now you have made a choice on what to do but I think my case might interest you. I am a 34 year old female with Desmoid in my right leg near at my knee joint area. It started for me when I was pregnant with baby #2 in 2003. Since this started I have had to date 7 surgeries and 6 weeks of radiation. My last surgery was a very extreme clean out as I call it with removal of a calf muscle to replace all they took out. I followed with my radiation following this surgery and this part happened in spring of 2006..... This week I got the bad news that it did not work and we will be faced with this again. So your question about radiation and does it work, I am going to say I dont think so. It slowed it for sure I was able to breathe for almost 3 years now but to go through putting radiation in my body for this short of a span it's not worth it. It is a choice you will make for you of course but I do have some super awsome docs that will guide me again for the next round. I go to MD. Anderson in Houston Texas they know whats up.. I have also been in France to see some big specialists there as well they are on cue with my docs so if you have any questions maybe I can help. I hope when you get this all is good, but we never know with this little devil do we.

Good Luck,

Sheila

Hey Sheila,

I´ve had somewhat similar experience with you,
although not so many surgeries. I´m now 31 years old. I was diagnosed
in 2003 with desmoid tumour in my left leg. I had two surgeries within
6 months and after the second surgery I got radition. The tumour was
still there, but wasn´t growing for a long time. I got a baby and when
I finished breast feeding, the tumour was growing again. I had my third
operation in 2006 and fourth 2008. I got radiation again. My tumours
have been multifocal, so I´ve had them in several places in my left
leg, usually one at a time. If I´ll still have tumours, I´ll suggest
hormone therapy. But hope there won´t be a next time.   

 Let´s hope for the best for all of us.

 Tiina

 

On 7/19/2006 Annnnnne wrote:

I was diagnosed with a desmoid tumor on Dec.24/05 and had it removed on Jan.21/06. I have decided not to follow up with the radiation treatments because it is so close to my ovary that I may not be able to have anymore children in the future. It has only been 6 months since the surgery, but I was wondering IF all the people who have had surgery had it done by an oncological surgeon? And has anyone had it come back after radiation?

Like most of us dealing with Desmoids we have done the process of cut, burn and chemicals. I was diagnosised in 2006 with having a desmoid tumor the size of a goose egg in my lower right butt cheek. I was very active and extremely health contious being a cheerleader in college. I was freak out when I found out I had this and had a very hard time getting information on treatments. I was refered to a surgical specialist that was out of UW in Seattle but closer to me in Spokane, WA. He took very large margins and I had to relearn how to walk with all the missing muscle. About a month and half after the surgery, I had 6 weeks of radiation, Then I was clear of it from Aug. 2006-Dec. 2008. And then it was back in the radiated scar tissue now around my sciatic nerve and grew from Dec. 2008 till Feb. 2009 I then did Chemo hoping that would end it, knowing I was not going to be put into menipose as a 21 newlywed. The Chemo had no effect. That is when I changed my diet with all the research i tried to find. To me it seemed that I was finding Desmoids reacting to hormones...thus the hormone therapy so I cut out all dairy and meat products. Then soy which was huge. and then sugar yes...all sugar even limiting natural sugar in fruit. No processed food either. It is a Raw Vegan diet. It stopped my Desmoid straight in its tracks. Along with my diet I started physical therapy and massage all the scar tissue. I can run, bend over and keep a positive attitude knowing I am healing my body and it's working. Good luck to you and be smart.