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Chemotherapy treatment for metastatic soft tissue sarcoma MPNST

mpd0353
Posts: 4
Joined: Feb 2012

My husband was diagnosed with MPNST of the sciatic nerve in 2009. He had a local recurrance in 2010. He then had surgery, radiation, and chemotherapy. At that time the chemo regimine was ifosfamide, doxorubicin, and mesna. This summer we were told the sarcoma had metastasized to his lungs with appx 10 nodules. We waited throughout the summer to check for growth and decided to have surgery. He had the surgery 9/23/13. We went for his follow up 11/10/13 and there is already more cancer. At least two 1 cm nodules. My husband starts a new chemotherapy regimine Monday of Gemcitabine and Docetaxel. I have read this is a palliative chemotherapy regimine. I am googling like crazy and trying to learn as much as possible. Also looking for clinical trials since we were told that this sarcoma once metastasized to the lungs only responds to chemotherapy 30% of the time. They will not do anymore surgery if he is not in some way responsive to this chemo regimine. The reasoning is that since it has been less than 8 weeks since the surgery and the cancer it back it would be like a "dog chasing it's tail". I have been brave and strong for so long and now I am finally in the frantic, oh no we are getting to a cross roads panic stage. He is 47 years old and determined to keep fighting even though this has been a non stop 4 years of devastating news. As long as he wants to fight I am going to fight hard with him and for me that means researching the hell out of this rare disease. 

 

I am posting all this because I am hoping someone can tell me that this chemo works!! Can anyone give me any bit of info on this chemo or any other treatments they have had. 

 

Thank you!

Heather

n13wagner
Posts: 3
Joined: Nov 2013

Hello Heather,

you and your husbands resiliency is inspiring, thank you! My farher will likely be starting the same chemo regiment as your husband in the coming weeks. I'm also trying to find out as much as I can for hIm. I'll keep an eye out in my research travels and try to report back anything I find.

 

stay strong

 

-N

t123
Posts: 25
Joined: Feb 2013

Fyi. Last Spring I received 6 rounds of Taxoil. Once a week. This did not shrink my tumor at all. I then had the tumor removed by surgery followed with 37 radiation treatments. Three months I was clear then this October the scan showed 5 tumors in the liver & on small one one the lung.
NEW Treatment: for one week 7 hours each day I receive Ifosfamine & Mesna (to block internal bleeding of the bladder). In addition; each night I leave the cancer center with in IV Pump hooked to the port in my chest. While I slept I received the chemo drug Adriamycin. On Friday they give me a shot ot raise my white blood count. The next week I recover and the third week I go to work. Then the cycle repeats it's self for the next three months. Four months total and two scans during this treatment. Has anyone else gone through this too? I appreciate hearing any information. Thank you. Cathy

t123
Posts: 25
Joined: Feb 2013

Heather , I heard that the two chemo drugs have worked to shrink tumors on at least one lady, who had been diagnosed with seconday angiosarcoma. Good luck to your husband and yourself. How are things going now?

suzanne611
Posts: 3
Joined: May 2011

I was diagnosed with soft tissue sarcoma in 2010. I was on a study through Sloan with gencitabine and doxetaxol and had resolution of my tumors. I have only been on that therapy since 2010.  I have had good luck with it.  Everyone is different I would look into the larger institutons that have research studies.  Be aggressive with your search for treatment options or consider  a second opinion.

When I was diagnosed in 2010 with a one year prognosis and I am still here. The treatment options for me at that time were surgery and the internet said chemo was not effective.  So keep the faith because new treatments are being discovered every day

good luck ..oh and I am 48 and a single mom... I understand our frustrations 

kphelps12
Posts: 2
Joined: Apr 2013

I have soft tissue sarcoma mets in my lung and did 5 rounds of adriamycin/ifosfamide/mesna from June-Oct 2013 which resulted only in stabilization. I started Votrient 800 mg / day in October and still have stabilization with no new growth. Side effects are very minimal so far. The medication is extremely expensive but get it FREE through GSK Commitment to Access program. Check this out as a possible option. Keep fighting! 

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