LONG TERM SARCOMA SURVIVORS WANTED

14 year sarcoma survivor
Hello. I've never even been on a message board before, so this is new to me. I am a 47 year old mother of 2 and a 14 year survivor of soft tissue sarcoma. The large and aggressive tumor was in my pelvis. I was treated with radiation and radical surgery at MD Anderson. My son was only a year old when I was diagnosed and I was fortunate enough to have another child 4 years after my treatment. Have had to have several more reconstructive surgeries (latest one in Nov 2010) to repair damage due to the cancer treatment but otherwise have been well.

JenniiR said:

50 year survival
In 1961 I had a second and final surgery for Fibrosarcoma. At the time, it had an extremely small cure rate. But, I am here 50 years later. I hope this brings hope to you all.

Fibrosarcoma
I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

ccsdad said:

Clear Cell
Cyclegirl, could you give me some idea of the treatment you went through with your clear cell sarcoma. my son has had six surgeries last two in his lungs clean margins, but now they want to use chemo. Just wondering what was your case. Anyone reading this post has info on chemo and clear cell it would be appreciated.
thank you

Clear Cell Sarcoma
Seven years survival. I don't think Chemo or radiation work, sorry. Work on diet, stop feed the cancer cells. Try reading The China Study.
Stop eating all dairy products, now. Doctor's are good at cutting, removing, drugging, ect... but they suck at curing. Doctor's kill or remove the cancer cell, along the way they kill and remove a lot good cells. Doctor's going to do what they do and you most likely have to go alone with it. You need to feed the body what its need to help the healing and cure the cancer. I wish your son well, good luck.

Marvusman said:

2 surgeries, almost 2 years
I was 1st diagnosed with a huge 12.5 cm Leiomyosarcoma in my duodenum in my abdomen which underwent a Whipple surgery to remove. I didn't need chemo as there was no metastases but then just after 1 year my cancer returned and I underwent another surgery. It was rough having another massive surgery through the same scar tissue and same point of entry. I'm awaiting the start of chemo and probably GLEEVEC now as I also have a small cholangiocarcinoma. Anyone have similar experience? The truest thing I can say is that while cancer may strip away parts of your body NEVER let it strip away your soul and spirit.

My my has LMS too...
Hope all is well.. I'm new to the site. You are not alone in this fight, my mom just underwent a craniotomy for LMS two weeks ago, she will be having radiation in a few weeks. here is her history:

January 2005 - Surgical removal of LMS Tumor located in the Ureter, Teratoma Tumor Removed and complete hysterectomy.
January 2006- Surgical removal of LMS Tumor in the Coracoid/Glenoid Process (Left Shoulder bone removed) onset of disability
December 2008 - Surgical removal of LMS Tumor in the Psoas Muscle and small intestine
November 2010 - Cryotherapy surgery to remove LMS Tumor T-10 Vertebrae
January 2011 - Radio Frequency Ablation to remove LMS Tumor T-10/T-11 Vertebrae Area
March 2011 - Craniotomy surgery to remove golf ball size LMS tumor from the brain and small LMS tumor from ear canal

You are so right about cancer stripping away the body parts! She also had double scar tissue build up from having two abdominal surgies in the same area. Hope you are doing well!

megace
hi there,

I am glad to hear you are doing well. i was wondering if you could tell me the megace dosage that you used? I am considering this treatment for a young patient with ewing's sarcoma that is progresterone rec3eptor positive.

thank you.

Dr. Kim

osteosarcoma right lower femur diagnosed 96, chemo limb salvage
This June I celebrate 15 years in remission!!! And yes I still have leg pain but hey I have my life!!

20yrs survivor
Hello. I am a long time survivor of Rhabdomysarcoma. I had it when I was only 3 yrs old and now I am 28. The cancer was on my bladder and thankfully just thentumor was removed. Even though I am well now,this have been a very long long road. Right now I am recovering from a surgery and thankfully it didn't have nothing to do with cancer but I can say that this have been a rough,emotional,experience. Over the years I have had many surgerys. I recently lost count. Every other year I have had a surgery or lik the last 2 years I hv had them every year. Again the wasn't related to cancer as far as I know but it did result in me losing my ovaries and going through menopause at a early age. When I was around 16 my left ovary was removed because of a cyst, then following that ia had a lump in my breast that had to be removed as well. Since my surgery in 1986 to hv the tumor removed I have not had any more cancer,although I still have had many surgeries and on going problems due to the extensive amount of chemotherapy n radiation i took. Granted this have been a rough ride but I am blessed and I am thankful and I am always willing to share my stories with anyone that can relate or possibly had or have the same problems I had

Marvusman said:

2 surgeries, almost 2 years
I was 1st diagnosed with a huge 12.5 cm Leiomyosarcoma in my duodenum in my abdomen which underwent a Whipple surgery to remove. I didn't need chemo as there was no metastases but then just after 1 year my cancer returned and I underwent another surgery. It was rough having another massive surgery through the same scar tissue and same point of entry. I'm awaiting the start of chemo and probably GLEEVEC now as I also have a small cholangiocarcinoma. Anyone have similar experience? The truest thing I can say is that while cancer may strip away parts of your body NEVER let it strip away your soul and spirit.

How are you today
I had about the same. Not on gleeve but DTIC, you must have GIST? How are you doing these days?

carolfrommn said:

40 yr osteogenic sarcoma survivor
1967, right leg amputated
1068, 1969 and 1970 surgery for mets to the lungs
1996 breast cancer, right breast hacked off.

I now have RA.

I have survived, but life has been very very tough. I am in my 50's now and I know I should be so grateful....but I have had a lifetime of fighting cancer....

I know people do not want to hear depression stories...so i wont go there.

Wouldnt you think after 40 plus years we would be a bit closer to finding a cure for this horrific disease?

Depression and cancer
Wow, Carol! It does sound like you have had more than your share of cancer. No one on earth would blame you for feeling down when you've had such pain and struggle in your life. Still, I think it's amazing to me that you've not only beat it once but 3 times! Congratulations!

ronny said:

Almost 10 years
I am going on 10 years in May. I had Ewings sarcoma, with 2 recurrences with metasis to my lungs. I am currently on a clinical trial with no signs of it.
Ron

Lungs
Hi Ron, My younger brother was just diagnosed with Sarcoma and it was attached right behind his lung. It was removed along with the area around it. Was this similar to what you had?