MPNST - Malignant Peripheral Nerve Sheath Tumor

tgwih said:

Hi,
My wife was diagnosed with MPNST 2 years ago (sporadic no NF). It occurred in her lower right leg and was large enough that the doctors felt it necessary to perform a below the knee amputation. We were told that they had achieved clean margins and that she would have to be scanned every three months. They scanned the area where the amputation occurred and her lungs as this is where the disease tends to show back up if it does. It was less than a week after her second scan and "clean bill of health" diagnosis that she found a large lump on her upper thigh. After a fine needle biopsy it was confirmed that the disease has returned via he lymphatic system (from what I understand this is pretty rare). Additional scans were performed and confirmed lung metastasis as well. They recommended Chemo. 7 rounds of MAID therapy, followed by surgery to remove the lung nodules and the tumor from her thigh. After surgery she also received radiation to her upper thigh.

6 months later the cancer returned to her lungs. It was actually there during the first scan after surgery, but it was so small the doctors couldn't see it. After comparing her next follow up scan to the previous they could see tumor growth. she had surgery (this time laproscopic) to remove the three they could see on the scan. They found another two while they were in there. her first follow up scan is at the end of March, so we've got our fingers crossed. I wish I had a better story to share with you, but all we seem to hit are setbacks. Chemo has not worked, radiation, surgery. We'll be looking at clinical trials if it shows up again.

My wife just had a MPNST removed from her lower leg. We do not know yet if it has metasticised.  Did you husband feel pain in his sciatic?  

LForbes1025 said:

Son age 26 diagnosed with MPNST in April 2013

My son was diagnosed with a MPNST in his abdomen.  He was treated with the same chemotherapy that your husband experienced.  My son almost died from the treatment.  He had a 23 CM tumor removed from his abdomen but they called it debulking because they could not get it all.  He is in a similar situation as your husband because a recent scan shows tumors growing in the peritoneal lining of his abdominal cavity.  His oncologist mentioned chemotherapy but it sounded like what your doctor suggested.  I am getting a very bad feeling about it.  If you do find out anything that would be helpful, please keep me in the loop. 

Hello, My husband has abdominal cavity mpnst for 1 year. He has gone through the following:

First, radiation treament 5 days a week for 5 weeks =it worked on about 70% of his tumor.

Next he had surgery that removed his tumor. We thought is was sucessful but we went for a check up scan and the cancer had metastasized to lungs. 

Next he went thru 5 rounds of ifosfamide is given together with mesna. It was working he was suppose to have 6 but it was damaging his kidney. ( which are barely functioning right now)

Now he is on Votrient. He is tired and a little nauseated. But able to put up with it. I have learned in this process you have to be fighting the Sarcoma all the time. During my husbands ordeal when ever he took a break (before surgery, after surgery, after chemo....it grew and came back quick. I still have hope, Votrient sounds promising. Clinical trails are ongoing and they may find a better treatment soon.

My 9 yr old niece was diagnosed with MPNST at the age of 7.  She is NF1 Negative.  The tumor was on her right forearm.  The did surgery, aggressive chemo, and radiation for a yr.  She responsded well, actually the tumor responded by shrinking, she on the other hand has exstensive heart damage from the chemo that was administered.  She was to go back for scans and work ups every three months.  she returned this month on the 27.  On th 28th we learned her cancer has returned and metastasized to her lung.  We don't have the full details yet, wont know til wend. after the cancer board meets and stratigizes her case.  But she cannot receive any more chemo bc the previous heart damge that occured.  they tossed around radiation, clinical trials, and alternative treatments when they told us the cancer was back, but nothing is definite.  I'm terrified.  The statistics, to say the very least, are bleak and utterly frightening.  Does anyone know of any promising clinical trials for metastasized MPNST's?  I would really like to hear from anyone who has successfully used natural cures for a previously diagnosed MPNST.  I've been doing research but there is just so much out there and I'm having trouble distinguishing the real stuff from the frauds.  Any help would be greatly appreciated.  Julia is only 9 yrs old.  This just isn't fair.  She deserves a childhood.  A life.

I was originally diagnosed in 2008 with a tumor in my right knee and femur.  I had chemo and radiation which my tumor refused to respond to, and I ended up with an amputation.  I just got done in May 2008 with treatment for mets in my right lung and a bit in my left too, which had gone through my lung and pleura and had attached to my diaphragm.  They did a wedge resection of my left lung and removed the bottom and middle lobes of my right lung.  No chemo or radiation due to the fact that I didn't respond anyway last time.  First set of clean scans just happened this week.  I did go several years cancer-free, hopefully I can do so again.

Help, my name is britney and I was just diagnosed with cancer. Spindel cell tumor sarcoma stage 2. Plus I have Neurofibromotis 1 I had surgery on the 27 of April and had it removed . That's when the doctors told me it was peripheral neeve sheath tumor with extensive necrosis size was 3x 1.4 cm. I'm really down I'm 30 years old with 2 beautiful children. I will be having to go through radation an chemo but I've researched and seen outcome and it's not looking good has anyone went through this?

Mandaclari said:

MPNST Survivor Since 2008

I was originally diagnosed in 2008 with a tumor in my right knee and femur.  I had chemo and radiation which my tumor refused to respond to, and I ended up with an amputation.  I just got done in May 2008 with treatment for mets in my right lung and a bit in my left too, which had gone through my lung and pleura and had attached to my diaphragm.  They did a wedge resection of my left lung and removed the bottom and middle lobes of my right lung.  No chemo or radiation due to the fact that I didn't respond anyway last time.  First set of clean scans just happened this week.  I did go several years cancer-free, hopefully I can do so again.

hi, I was just told I have a tumor in the nerve sheath of my peroNeal nerve after having an MRI for something else in my knee. this was for work so the nurse at work told me about the tumor and said, " go see your doc " I don't even know what this will all entail. Could you shed some light on the subject for me pleas. Thank you.

My wife has NF1 - 2 years ago an NF in her left leg was found to be a sarcoma and she had her left leg amputated above the knee.  The cancer metastasized to her lungs, she had more surgery to remove the nodes and we almost lost her because of complications.  A few months later the nodes in the lungs were back.  The docs finally tried chemo, we're having luck with a combination of Gemcitabine and Docetaxel, as in the tumors have not grown.  We just had another scan today with no new cancer growth.   I was wondering if anyone else had luck with chemo treatments for MPNST with NF1.