Sunday, May 18, 2008

About me

I am just starting this page so give me a little time to get it up and running. I have been living with a desmoid tumor for 5 years now The first 4 and a half doctors said I was crazy and told me there was nothing wrong then they found it when I was 6 months pregnant. I had the baby and 3 weeks later 6 lbs of tumor was removed from my right gluteus muscles. I was good for about5 months before it returned. Now, a year later, I am still in constant pain and working with doctors trying to find drugs to help my life become manageable. The longer I have this, the more I desire a support system. I cannot find one, so I am creating one. If you or a loved one are suffering with a desmoid please help me group and find a voice so we can be heard. We need to find a cure and we need to support one another!!!

22 comments:

Corrie said...

Yes I know what all that feels like, except the having a baby part. I have a Desmoid in my right glute as well. I have done the sugury, radation. Then came back a year later on the siatic nerve so no to the sugury and I went with Chemo...very strong Chemo. I lost my hair for my wedding a regret all those doctor days. The only thing that has worked is actually getting healthy..er...as I was alreay 90lb College Cheerleader. The Gerson diet and remidies along with Halliluiah Acres and basic sarapeptase Enzyme has allowed me to walk again. I hope you can find comfort in the fact that there are others who really know what pain is from Desmoids. Keep up the good fight!!!!

Carol Kanti said...

I'm so thrilled! Last month i've created a blog to tell my desmoid tumor history [unfortunatelly it's in portuguese, i'm from Brazil] and to find people that just like me, have this same condition... Now my boyfriend founds your blog! I couldn't read all your posts to know your history better because I had to tell you how happy i am to find someone else that shares the same pain, feelings and thoughts first!
I'm willing to share my experiences and to know yours so we could know the different threatments each doctor uses and to have an idea of what choices to make from now on. Thank you very much for your initiative!

Michelle said...

Did the chemo work? Is anyone having any success reducing or stabilizing thier tumor???? I'm having trouble. Here's what I've done/learned: I'm a 38 year old female and have a desmoid on my chest wall above my left breast. It was removed surgically (10cm)and has recurred within 5 months. It is growing fast and is probably 5-6cm's now. I did not have any other treatment (like radiation therapy) post surgery. Doctors worry about mutation of the desmoid cells into malignant cancer cells. Although the radiologist I met with said there is low risk of that (who knows?). The surgeon who removed the tumor recommended a second more radical surgery which would take 2-3 ribs & possibly other structure in the area to get "negative margins". Meaning the surrounding tissue comes back negative for desmoid cells. However, I was told by other surgeons (Colorado Limb Consultants & Dr. Singer with Memorial Sloan-Kettering Cancer Center in New York that even if they do get negative margins the nature of desmoid disease is that healthy cells can mutate at the disturbed or injured surgery site. This surgery would require major reconstruction and it could still come back. Oncologists put me on hormone therapy (Tamoxifen an estrogen blocker & Sulindac an anti-inflamitory). I was concerned about this treatment being to "weak" and not keeping up with the growth. So, I went to Sloan-Kettering in New York. They did not like the idea of surgery at all, they didn't like the radiation therapy idea either and thought the hormone therapy approach (which can put you into early menapause by the way)was too weak given the aggressive growth in my case. Their recommendation is to start on one of 2 choices for low dose chemo. 1) First choice is Sorafenib, pill form,few side affects. It could stabilize and might shrink it. $4000.00 per month if insurance doesn't cover it though. They use it to treat cancer, but it isn't FDA approved yet for this application. 2)Dosorubicin Liposomal or "Doxil". This is injected, takes 60-90 min.'s once a week for apx. 4 weeks. This has more side affects, but is supposed to protect against hair loss and damage to the heart. Currently waiting for approval from my insurance company for the Sorafenib and will try that course for now. This sucks huh? It's hard to find doctors that even know much about this since it is so rare and each discipline has a different view (oncologists, surgeons, radiologists). I feel pretty confident in the doctors at Sloan-Kettering. michellezeier@yahoo.com if I can help anyone or if you think you can help me. Thanks!!!!

robert.hooser said...

I'm a 52yr old male and had a desmoid in my left chest wall 3 yrs ago. I had it surgically removed with positive margins because of it's size. It grew back to 13cm with Mayo doing nothing. A local oncologist in Geneva, Il Dr. Robert Bayer recommended neutron therapy in Batavia, Il. The side affect's are not the best but the tumor has shrank to almost nothing.

Talisa said...

Hello! I have also writen about my Desmoid Tumor on my blog http://peacefulwillowfarm.blogspot.com
Are you still blogging? Says your last post was a year ago.

Kimberly said...

I had a desmoid tumor (20X10.5X10cm) removed from my left flank. I had the surgery May 6th, and was just cleared September 7th to go back to work. I had my lower 2 ribs removed and only have a slight portion of my obliques left. Three weeks after my surgery, my incision opened up and I was on a wound vac for 50 days. I was sewn up for the 2nd time on July 21st. I'm healed, but there is a constant tightness in my left side, as if my skin were being pulled from the back around to the front. Because of the gortex and alloderm that was implanted inside me in order to "rebuild" my insides, it sometimes feels like it's blowing up like a balloon, because everything suddenly gets tight. I don't understand any of this and I feel as though I need a map of my insides. It's all very confusing. Please check out the Desmoid Tumor Research Foundation website, they are having a symposium in Philadelphia November 13-14 and there will be 4 doctors/scientists there to discuss Desmoid Tumors. I will be there, hopefully to gain some insight and meet other DT patients. (You can subscribe to their site to get emails on special events like this one.)

Good luck to all Desmoid Tumor patients!

QuarterLifeCrisis said...

I too have been dealing with a desmoid tumor for 3 years now. I'm currently going thru chemo. I have a blog if you want to follow my journey!

http://normaleverydaycrisis.blogspot.com/

shayla_skg said...

I had a Desmoid on my left chest wall that was removed about 9 months ago it was attached to wall and grew around collar bone so I now have a metal bar as collar bone and metal plate on chest I just found out today that the bump I feel is the tumor again. I dont know how to feel I'm angry scared etc the surgery before was the MOST painful thing I could ever imagine. Now they want to fly me to Seattle to specialist for removal and possibly chemotherapy...

Natalie said...

What does this Desmoid tumor feel like in a glute and how would they test me to find it? I have had right hip problems for about 6 years now and its just gotten worse. I have had X-rays, cat scans, and MRI's with and without dye and they can't find anything. I just recently discovered while I was rolling out my hip with a foam roller that on my right glute I feel what seems like a Trigger point or knot...but it doesn't feel the "same" as my trigger points in my back when I rub it. Does anyone know how I would find out if this isn't a knot and it's something more like a desmoid tumor? Thanks!

jeannie said...

My name is Jeannie and Ihave been living with desmoids since at least 1988 when they went in to remove an ovary. It turned into a six hour operation with several doctors working on me. I was filled with desmoid only back then they were so rare that they sent the tissue to New England school of medicine where Dr. Robert Scully put the name, adenofibromytosis to them.
More recently, at this time I am under the care of several doctors in Tucson, AZ. There is no plan to operate and it seems that the desmoids are not damaging tissue, ligaments, or organs as we speak, but I have much pain in my abdomen. It is a burning, sting kind of pain. I was told that I would not survive chemo and am on Evista which happens to be one of the meds used to control the tumors, so the plan is pain management at this time. Recently, after two years of treatment for the pain with medicine, nerve block injections, physical therapy, etc., I fit the criteria to have a neurostimulator implanted in my spine,
I has proven very successful and Ifeel Ihave my life back!

chelle said...

I was just diagnosed with a desmoid tumor and seeking treatment. The surgical oncologist wanted to rush me right off into surgery beyond the typical biopsy. I say hey wait a minute I'd link to know more about this before you take a hunk of my precious flesh and livilihood. I'm looking to do a research study drug in hopes of shrinkage. Another young man called me and said that it changed his life and now he is well. I also hear that between drug therapyif you follow the gerson's therapy diet you can see results as well. I believe I am about to set out on an adventure of a lifetime. I'm scared but indeed I am hoping for the best and definately aware of the worst. If I have anything to do with it my leg will stay intact and I will live whole again. be educated and write your own prescript of what makes you healed. Check out Dr. Lissa Rankin.

Alicia said...

Your blog is several years old. I wonder if you will even get this message.

I have a big ole desmoid in my lower right back. I am going to have the surgery to remove it at the University of Washington Medical Center. It will be a 2 part surgery, first the surgeon will remove the tumor, next a plastic surgeon will fill in the space left behind when the tumor is removed.
They tell me I will need only radiation afterwards.
The surgery has not been scheduled yet, but will be within 2 months .

Sheila-Kristine said...

Does anyone know the difference between demoed tumors and Derkum's Disease?

Sheila-Kristine said...

Oops, I meant desmoid

Karolynn said...

Michelle - Just wondering if you could follow up with any treatment you've had done and the progress of your Desmoid Tumor since 2010? I currently had mine excised close to the same area. Any information would be great!

TonyMac said...

Tony McFarland

I hope you are still working on this blog. Today the doctors told me I have a desmoid tumor. The biopsy bent the needle, no sample. Very hard only the size of a golf ball if the scans are right. CT and US. It's tied up with my veins and arteries and nerves. The VA (veterans administration) maybe sees one of these every couple of years. I am 62 and I have a very good wife, Marge. Old Veteran who nobody would hire but now I guess that portion of my life is over.
Pain is 3-4 level, sometimes 5-6. Like a rock in my gut. I have to stand most of the time or lie down. totally spent some days.
Thanks for this blog.

Talisa said...

Hello Everyone! I have had several Desmoid Tumors and write about it on my blog at
http://peacefulwillowfarm.blogspot.com.

Francine Thompson said...

My daughter is 16 years old and was diagnosed with desmoid tumors in August 2012 in which the doctors at the Washington DC Cancer Institute immediately performed surgery. They decided to do " wait and observe" as her post-treatment plan as opposed to doing radiation on a otherwise healthy 15(at the time) year old girl. Well a year later , 2 MRIS later this aggressive tumor has grown back with a vengence and has now travelled into her right shoulder close to major nerves. We are now on our way to JOhns Hopkins tomorrow for a 2nd opinion as the WHC has decided that another surgery is required on 11/15/2013. I often wonder had the initial doctors tried to shrink the tumor when first diagnosed through hormonal therapy would it have spread so quickly and would be be in this predicament now. I have recently signed up for the Desmoid Tumor Research Foundation and will be a strong supporter of research needed for this life changing condition. My daughter has aspirations of attending college in 2014 and we are going to undergo major dietary and lifestyle changes to help and support her during this life journey.

soila rios said...

How is your daughter doing? What health changes is she doing? I also have desmoid on my b plexus. Neck. So far surgery is for April 2014. Very scared...any advice

Unknown said...

I was diagnosed with a desmoid tumor 2 years ago in my chest wall above my left breast. I did chemo for 14 months and it seemed to have stabilized it. I have been off of chemo for 6 months now and it is starting to grow again. It has become very uncomfortable and I am self conscious about it. I am deciding between 2 drugs tamoxifen or sorefenib. Each have horrible side effects. Does anyone have any recommendations. I went into my last drs. appointment eager to have surgery and get a double masectomy so I don't have to deal with this anymore but I'm worried about reoccurence after reading everyones experiences. Does anyone have any suggestions on either drug?

Unknown said...

I was diagnosed with a desmoid tumor 2 years ago in my chest wall above my left breast. I did chemo for 14 months and it seemed to have stabilized it. I have been off of chemo for 6 months now and it is starting to grow again. It has become very uncomfortable and I am self conscious about it. I am deciding between 2 drugs tamoxifen or sorefenib. Each have horrible side effects. Does anyone have any recommendations. I went into my last drs. appointment eager to have surgery and get a double masectomy so I don't have to deal with this anymore but I'm worried about reoccurence after reading everyones experiences. Does anyone have any suggestions on either drug?

Rafy Isaac said...

Jeanne I see that you went to a surgeon in Tucson. Can I get the name please. Thanks!