Hormone Therapy For Desmoid Tumor

Hi everyone,

I'm new to this website, but I was diagnosed with Aggressive Desmoid Fibromatosis in my right calf muscle
back in early 2006. I have danced my entire life (competition company and
college club), and I was always lucky to be healthy, but I can't help but think
that maybe I injured that muscle without knowing it somewhere along the line
and triggered the tumor.

I went in for surgery after graduating from college and within 4 months the
tumor came back....times 4. Now, I have a large golf ball sized tumor right
behind my knee joint at the top of the surgery scar, one at the base of the
surgery scar and two small ones behind the middle of the scar.

I tried Colchicine when I first realized it returned....that didn't really
do much, so we changed gears and I started Doxil monthly for 4 months. Little
in the way of results for that and I got a horrible rash at one point. Took two
months off and then got a medi-port put in and started Vinorelbine in October
of last year. I was doing 6 weeks on and two weeks off for 9 months. I handled
both chemos AMAZINGLy well, but my hair did finally start to thin more, my skin
got very bad and my gastrointestinal issues, irregular menstral cycle and short
term memory loss- with really nothing in the way of results...less than a centimeter
of shrinkage in one tumor after 7 months-  finally pushed me to stop a
little over a week ago. The Docs agreed.

I'm taking two months off and will probably try Gleevec in
September...though the more I read about that, the more nervous I get about my
heart health. My doctor at Johns Hopkins (who i love) said she doesnt' want to
put me through radiation at 24 years old- i agree. So now the goal is more to
maintain the tumor than it is to shrink it. I'm never doing chemo again if I
can help it.... I've been doing Bikram Yoga (the hot yoga) and that muscle
stretching and strengthening has given me much better range of motion and
helped my knee joint stiffness. I still have the nerve pain, but there isn't
much they can do for it cause it's sporadic not continuous. I'm looking into
acupuncture now.

All of you, if you haven't already, should check out the Desmoid Tumor
Research Foundation website...  www.dtrf.org ....they have an annual
fundraising gala in October in White Planes, NY and they will not only have
other patients there, but they invite doctor's from all over who are studying
this disease. It's a little pricey, but I'm going to make it work because I've
never met another person with what I have and I think that is very important
when you feel like the only one in the world with this thing. I'm a young
professional, living and working in DC (originally from Boston- family is still
up there) and I have done everything possible to not let this interfere with my
quality of life, and I think I've mostly succeeded, but let's face
it....sometimes it's just hard and not many people can understand what you're
going through...especially at this age.

I'm seeing doctors at Dana Farber in Boston,
Johns Hopkins and Georgetown
Hospital. My surgery was
at Mass General in Boston,
but i was VERY unahppy with my doc there. If you need names of doctors to talk
to, just message me and I'll pass along the info. 

If anyone has tried Gleevec, let me know how it went!

Thank you and I hope all of you are staying strong and healthy. :)

 ~Amanda

Two years ago, I developed a dimple on my left thigh.  I ignored it because I had been heavy and thought it was cellulite (in retrospect, I feel stupid).  I went to the doctor and then went for xrays and MRI's that were indeterminate, but showed a mass.  So, I went for surgery, and the surgeon thought he removed old scar tissue until the pathology came back.  Today he told me it was a desmoid tumor and recommended followup with an oncologist and suggested that radiation might be in order. 

Needless to say, I came right home and got on the net and am freaked out (well I was freaked out anyway).  After reading how much it recurs, I almost felt like I should have left it alone and monitored it (but we didn't know what it was).  First, with only 900 diagnosis a year, there's not a lot of info.  Second, there's no definitive course of action.  I know my surgeon is sending me to someone who recommends radiation, but what exactly does the hormone therapy consist of?

Hi,

 I haven't logged on here in over a year but thought I would come on and give an update. My husbands tumor is now the size of a football, it is taking effect on his tendons and nerves. The Dr. he was seeing here made the call not to give him radiation or chemo as he claims that desmoids are slower growing than normal cancers so the cells in a Desmoid do not move fast enough to carry the chemotherapy or radiation through the tumor to kill it. In the meantime he also cannot have another surgery as this tumor is attached to the main nerve in his leg and if that nerve is damaged in the removal process then his leg will be rendered useless. He has been approved for Disability however which means he is automatically qualified for Medicaid. We are hoping to get him into the oncology unit at University of Colorado, right now that is our only hope unless we want to pack up and move to Minnesota and try going to the Mayo Clinic there. I will keep updating everyone as we go through all of this, apparently there really is not too much information out there, not even on the Desmoid Tumor Foundation's website, I even e-mailed them regarding my husbands tumor and they basically told me "good luck, don't know what to tell you" pretty crappy but I guess this is how its going to be until someone figures out how to deal with these things!!

Hi Amanda:

I wanted to respond to you because you mentioned Dana Farber. My brother who is 34 was dx with colon/sigmoid rectal ca due to FAP/Gardners approx. 2 1/2 years ago. That was dealt w/via chemo, radiation and a full colectomy. Then it spread to his liver. So last summer, another surgery to resect the liver. Since then, he developed a desmoid tumor which, unfortunately is intraabdominal and "non-resectable". Dana Farber had him taking Doxil.....during which 3 mths time, the tumor doubled in size.  We then spoke to an oncologist in Fall River (he lives in NB, MA) who put him on Sulindac and a once a month anti-hormonal injection.  The tumor has "stabilized" ie: stopped growing for now, approx. 3 months of this anti-hormonal therapy.....but something...suspiciously enough, probably the tumor, is causing an obstruction of his colostomy SO he just got back from Dana Farber where they are suggesting that they re-locate his stoma and while doing the surgery, try to remove as much of the desmoid as possible......only problem is that means removing abdominal muscles and they may need to skin graft as they may not be able to close the area w/o it.  He is a runner (throughout all of this, believe it or not), and if he does get this surgery, I don't think he will be able to run....or even jog....which is one of his greatest pleasures.

I am going to go w/him in two wks to Dana Farber to meet w/his surgeon. If desmoids seem to grow after a trauma or where there is scar tissue, it would seem more than likely that it will recur.......? 

What a mess......anyway, I guess I am venting (thanks for listening)...and that fundraiser for the Desmoid Foundation really sounds like something I think he may like to go to as well since this is such an unusual cancer, that no one seems to know about it.........I am a emergency room RN, and not one of my collegues is familiar with desmoids or FAP/Gardners.  I hope you are doing well at this time...and will be keeping everyone on this board in my thoughts and prayers.

Carla

This is so aggrevating!! We found out Yesterday that in our State/City in order to be able to apply for medicaid you must be on SSD for 2 years.... if you are on SSI you qualify immediately.....

 To get insurance for him is next to impossible and I have not found any organizations that help with this situation as it is very rare. We are looking into moving out of state just so he can get on Medicaid and get to a Dr and have this situation at least under control. I am getting completely overwhelmed with all of this, uprooting our family and the life we have made here for ourselves is scary as hell, but what must be done..... must be done.  On another note, Thomas has another MRI next month, IDK what it will show, his previous surgeon had him on Indomethycin (sp?) to try and get the tumor to shrink, I am keeping my fingers crossed in hopes that it worked.

What I do not understand is why the Dr wont remove as much of the tumor as possible and THEN try to shrink it with the meds, instead of trying to shrink it from the size of a football.... just seems to me it would be much easier and would shrink or start ceasing to grow if it is as small as possible from the beginning of treatment....

Any thoughts on this??????????

Hi i have just been reading your email!! I am 27 and have had tumours for five yeras now in my neck and shoulder area!

Your husband must be in a lot of pain!

I had surgery to remove one tumour and five grew back in its place as they could not remove it all because of surrounding nerves etc!!

I tried chemotherapy Vinblastine/methatrexate and it did not work for me but i had the max of radiotherapy and my tumours did shrink and eased some of the pain!! I still have the five tumours and i have just had mri results and it shows i have another growing, i am waiting for a descion from our health service as to wether i can get the funding for gleevec!!

I know the dangers of radiotherapy but i was willing to give it a go and although it did not get rid of them, i found it to be a good result from what i was living with before!!

I hope your husband finds something for him that works soon!! take care

On 7/30/2009 andipat wrote:

Hi i have just been reading your email!! I am 27 and have had tumours for five yeras now in my neck and shoulder area!

Your husband must be in a lot of pain!

I had surgery to remove one tumour and five grew back in its place as they could not remove it all because of surrounding nerves etc!!

I tried chemotherapy Vinblastine/methatrexate and it did not work for me but i had the max of radiotherapy and my tumours did shrink and eased some of the pain!! I still have the five tumours and i have just had mri results and it shows i have another growing, i am waiting for a descion from our health service as to wether i can get the funding for gleevec!!

I know the dangers of radiotherapy but i was willing to give it a go and although it did not get rid of them, i found it to be a good result from what i was living with before!!

I hope your husband finds something for him that works soon!! take care

Thanks...... Yes, he is in alot of pain. Right now he is on Percocet, Ultram and Diclofenac Sodium (Voleteran). The Dr.'s told my husband that Radiation, Chemotherapy and/or Cyberknife would not help. We ARE trying to get a 2nd opinion though, its just really hard when you dont have health insurance, and if we got him health insurance it would kill us financially....... to the tune of anywhere between 600 and 1000 a month is what we have found through the companies that WILL accept him. We are keeping our hopes up and we will exhaust every resource we can until he gets the help he needs!!! Good luck to you too! I cannot imagine having 5 of these tumors. He did go to the Dr last week and his tumor has grown, we wont know a definite measurement increase until he has his next MRI though. Good luck to everyone on here.... I think the reason this is so hard is because there is NOT a treatment that anyone has found that is known to work. Everything seems to just keep it at bay until another flare up, and thats if your lucky.

One question for everyone: How large is/was your tumor at its largest point?

On 8/3/2009 ramblinrose wrote:

 

On 7/30/2009 andipat wrote:

Hi i have just been reading your email!! I am 27 and have had tumours for five yeras now in my neck and shoulder area!

Your husband must be in a lot of pain!

I had surgery to remove one tumour and five grew back in its place as they could not remove it all because of surrounding nerves etc!!

I tried chemotherapy Vinblastine/methatrexate and it did not work for me but i had the max of radiotherapy and my tumours did shrink and eased some of the pain!! I still have the five tumours and i have just had mri results and it shows i have another growing, i am waiting for a descion from our health service as to wether i can get the funding for gleevec!!

I know the dangers of radiotherapy but i was willing to give it a go and although it did not get rid of them, i found it to be a good result from what i was living with before!!

I hope your husband finds something for him that works soon!! take care

Thanks...... Yes, he is in alot of pain. Right now he is on Percocet, Ultram and Diclofenac Sodium (Voleteran). The Dr.'s told my husband that Radiation, Chemotherapy and/or Cyberknife would not help. We ARE trying to get a 2nd opinion though, its just really hard when you dont have health insurance, and if we got him health insurance it would kill us financially....... to the tune of anywhere between 600 and 1000 a month is what we have found through the companies that WILL accept him. We are keeping our hopes up and we will exhaust every resource we can until he gets the help he needs!!! Good luck to you too! I cannot imagine having 5 of these tumors. He did go to the Dr last week and his tumor has grown, we wont know a definite measurement increase until he has his next MRI though. Good luck to everyone on here.... I think the reason this is so hard is because there is NOT a treatment that anyone has found that is known to work. Everything seems to just keep it at bay until another flare up, and thats if your lucky.

One question for everyone: How large is/was your tumor at its largest point?

On Sep 14, 2005 12:00 AM Monetmom wrote:

Desmoids are classified as aggressive fibroidmatosis, which is what started me investigating anti-estrogen therapies. Her tumor is on her back above her waist. She had a serious fall several years ago which they say my have triggered its growth. I'll pass on your good wishes and the fact that you're still going strong after 24 years. Thanks for your support and my best wishes for your continued good health. Linda

Hello,

I was wondering about your daughter. Which option did she choose and what was the outcome? I was diagnosed with a desmoid tumor about 6 months ago, it is located on my lower back and my doctor is recommending surgery to remove it. I'd like to know what others have experienced and what was the outcome. 

Thank you for your help.

Sincerely,

Julia