Leiomyosarcoma

My wife Cind Has just been diagnosed with Leiomyosarcoma. She has been dealing with some leg pain for a couple months,so we went to the doctor about 1 1/2 months ago,and they sent her to physical therapy. Well she went a few times,and it wasnt getting better so we consulted another doctor,and they did a MRI and found a mass in her pelvis. They assured us that it was probably nothing and sent us home saying they were gonna perform a fine needle asperate biopsy of the tissue. Well we had the biopsy done and waited for results. Two nites later,before we had the biopsy results,she woke up in the middle of the night short of breath and wheezing. She went to the ER and had a chest X-RAY. The results were shocking. She has sooo many tumors in her lungs,they cant count them all. She was admitted immediatley to the hospital and started radiation immediately on a tumor in her bronchial tube. She had 5 treatments of radiation,and went through 48hours of continuous Chemo with adryomyocin,and DITC chemo drugs. Well she is breathing better now,and she hasent shown ANY side effects of chemo. NONE!! She has coughed up several blood clots in the mornings,and gets stronger everyday. Am I fooling myself to think that this is working? She needs to go back to the hospital on November 18th for another 48 hour continuous drip of chemo. If there is anyone out there that can help me please let me know what you think?

        Thanks in advance,

         Troy

Troy

I am crushed to hear the story about your daughter.  My husband has been diagnosed with liposarcoma and for the past 2 yrs have been seen at Sloan Kettering Cancer Center in New York.  I don't know where you live, but if there is any way you can get your daughter there they would know for sure the best treatment for her.

I will keep her and your entire family in my prayers.

Sue

Hi Troy

I am sorry about your wife.  I was dx with LMS of the uteris 2 years ago and it came back stage 4 in June.  I have several suggestions, first and most important, she must be seen by a sarcoma specialist and a sarcoma center.  I'm not sure where you are located, you might check into Dana Farber in Boston and MD Anderson in TX.  But it is vital that her onc. be a specialist in Leiomyosarcoma.  If not it can cost her her life.  Believe me, I know.  I also recommend you go to the leiomyosarcoma website, there is a support link that is also very helpful.  Join this site, you will meet people who are caregivers and people like me with the disease.  These people will help you and lead you in the right direction as they did me.

Wishing you the best.

michele

Tony - My wife has different sarcoma: synovial. Regardless, adult sarcomas are quite rare. The best thing that I've done is to spend countless hours researching the disease, then using what I know to speak to (and at times, demand of) her doctors. First we had a general oncologist who didn't seem to know what he was talking about. Next, our primary care physician had the good sense to refer us to a hospital that has a sarcoma team. Being out of network, it cost us over $25,000 inside of four months (the cost of your wife's care is another thing, but from my perspective, I'd rather have a bankruptcy on my record so long as my wife is by my side). After surgery and radiation the radiologist said to come back in six months. From my research I knew that she needed to be scaned again in three months. I made phone calls, sent faxes, and made appointments to speak with several of her doctors. Initially, they passed the buck, but I knew what I was talking about and would not let up. I let my wife set the agenda with regards to talking about her illness at home, but outside the home, I am aggressively advocating for her. She is, after all, the love of my life. You and your wife have my best wishes.

Troy - I am sorry for calling you, "Tony." I guess I wasn't payng close enough attention.

- Tad (Radish)