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Chemotherapy treatment for metastatic soft tissue sarcoma MPNST

Posts: 8
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!


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



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

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?

Posts: 4
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 

Posts: 3
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! 

Posts: 8
Joined: Dec 2014

adriamycin/ifosfamide/mesna is what might be used with me,  I can read doctors notes online and the Oncologists  said not curative.


Pathology report had what cell types?


Posts: 1
Joined: Feb 2015

Hello there, I see you haven't posted anything since Nov. 2013 and I was wondering how things are going for both you and your husband. My husband was diagnosed with Sarcoma/MPNST under his arm and scapula area that has matastasized bilaterally into the lungs.

Our/his story is like so many other cancer diagnosed patients.....it took forever to be diagnosed. After 8/9 months of pain starting with slight pain to scruciating pain in the arm and scapula area with Dr. trying this and trying that till my husband ended up with severe night sweats and the Dr. requested a chest xray with results of bilateral shadowing then on to a CT scan and that is what showed the bilaterl nodules. We went to the Cancer Treatment Centers of America in Zion, Illinos for a biopsy of some of the nodules that showed positive for Cancer but, they had to map it backwards to the original location. They immediately started chemo real aggresive chemo no radiation and no surgery. Headed to have the 4th treatment they redid some tests with NO improvements actually the tumor and some nodules had gotten larger. With those results not being what the Dr's were hoping for they started a different protocol.

This was a quick and brief of our story, if you're still interested in sharing your story I'd love to hear from.

Thanks in advance.

Teamkelly's picture
Posts: 63
Joined: Sep 2012

You might try this trial http://www.cancer.gov/clinicaltrials/search/view?cdrid=764613&version=HealthProfessional&protocolsearchid=13812435.  My sister in law goes to a Sarcoma Clinic in Santa Monica, she has had recurrence after recurrence and they have kept her going for over a year, the drug listed in this study has 6 different trials a couple are for sarcomas.

Good luck.

Posts: 2
Joined: Jun 2015

My 9yr old neice also had a MPNST that later metastasized to her lung after she received chemo and radiation and surgery the first time.  This time she unable to have chemo.  But while we were at Johns Hopkins, another patient in my nieces exact situation with the MET and not being able to have chemo again, said that they are treating her with a new form of local radiationa and that her tumors in her lungs are responding to the treatment very well and they have shrunk significicantly.  I see that you posted this a while ago, but I wanted to post this info anyways, in hopes that even if it has reached you too late, that someone else who finds this thread is able to benefit from it.  i will say this, Florida Hospital and Johns Hopkins both have teams of physicians that specialize in MPNST's and they are very good at what they do, you may try them for treatment or a second opinon.  

Posts: 1
Joined: Jul 2015

Just wondering how things have been progressing with your niece.  I hope that all is well.  I was diagnosed with breast cancer--rare form-phyllodes tumor with sarcoma.  It was rare that it would ever spread but I now have nodules in my lungs.  I'm just wondering if this new type of radiation might help me.

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