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MPNST - Malignant Peripheral Nerve Sheath Tumor

Posts: 8
Joined: Feb 2012

My husband was diagnosed with Maligant Peripheral Nerve Sheath Tumor approx. 3 years ago. The tumor arose from his sciatic nerve. He had surgery in which he was originally told it was a begign nerve sheath tumor and a month after we found out he has high grade MPNST. He has had clean check ups every 3 months for the last few years however he has been in significant pain since the surgery and radiation that followed 3 years ago. After a significant increase in his pain this last month we decided to have an early MRI done and the tumor has reoccured. I am very concerned as I have spent a lot of time on the computer and see the prognosis is just not good. I am hoping to hear from survivors or caregivers of people diagnosed with MPNST. I would like to hear your stories, successes, and set backs. Since this is so rare I haven't come across any sites that have other people with this particular type of cancer. Prayers and Blessing to all. Thanks for any stories, feedback you can give.

Posts: 2
Joined: Jan 2011

Dear MPD0353, I am sorry to hear about your husbands recur. Hope that the Drs have some viable solutions.

I was diag with MPNST 4 years ago, very large 23cm long and it was straddling the sciatic nerve. I had radiation prior to surgery. I have had a fair amount of pain since the surgery but no reoccurence. I see the Dr's every 6 months and have an MRI and pelvic Xray once a year.

I have NF which of course increased my risk for this very rare cancer. My sister had a MPNST in her shoulder over 20 years ago now. I know there are many statistics about survival rate etc but here we both are :)

If its of any help I take a low dose of gabapentin that helps with the pain from the irritation to the sciatic nerve, however I don't want to raise the dose in case I "miss" any extra pain telling me I might have a recurr. I did not have chemo, however it is interesting to note that the one chemo I have heard about for MPNST (Doxorubicin?) is the same one I had to treat breast cancer in 2002 ...

Posts: 1
Joined: Dec 2011

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.

Posts: 8
Joined: Aug 2009

I was diagnosed with a 5cm, high grade MPNST (sporadic - no NF) in my sciatic nerve almost 3 years ago now. The tumor was deep in my pelvis, just off my spine - but it responded to chemotherapy and shrunk considerably. I had radiation and then a full surgical resection of the tumor. I lost function in my left leg due to the removal of my nerve - but the tumor is gone, there was no metastasis - and I get scanned every 3 months (for the first 2 years) now I'm up to every 4 months. Still all clear. Please feel free to contact me directly if you want details about my treatment, doctors etc... This is such a rare thing - I've yet to actually connect with anyone else who's experienced an MPNST in their sciatic nerve.

Be well.

Posts: 1
Joined: Mar 2012

Hi, my mum has been diagnosed with a 6cm tumour encased on her sciatic nerve. This is secondary to bladder cancer she had approximately 3 years ago. Whilst we have not been told the actual name for this type of tumour/cancer I can only assume from what I am reading on here that it might be MPNST. At present she has had 33 sessions of radiotherapy only to be told that this has had no effect on the tumour. We were told by our consultant that surgery was not an option because of where the tumour is and are waiting to find out if/what they plan next. I have been trying to find out on the internet whether surgery is actually possible and from what little i have read it seems it may well be a possible option. I may actually be barking up the wrong tree in my own diagnosis of what this type of tumour/cancer is called (the consultant does not want to tell us other than it is secondary cancer!) but i would really would appreciate any information, stories, anything really that anyone can share with me about this awful disease. My thoughts are with everyone that may be having to deal with what we are going through.

Posts: 1
Joined: Jan 2014

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?  

Posts: 8
Joined: Feb 2012

I have been off this site for quite some time. Yes he most definitely had pain. All the doctors had a million different reasons for the pain and pushed pain meds but none took a really close look for almost a year. When we finally got to a great doctor is took him two appointments to refer us to an Oncologist and that was the beginning. Still fighting 5 years later after much surgery, amputation, radiation, and chemo. Next step is Votrient. I am sorry I am so late in my reply. My thoughts are with you and your wife and pray that you both are hanging in there. 

Posts: 1
Joined: Apr 2014

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. 

Posts: 1
Joined: Feb 2014

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.

Posts: 8
Joined: Feb 2012

Can you please share with me your husband's experience on Votrient. My husband will be starting later this month. It is pretty much the last line. He has been through everything else and although worn down he still wants to fight as hard as he can. He is 47 and still wants to get as much out of his life as he can. 

Posts: 1
Joined: May 2015

Hi I was wondering how is your husband doing?I was just diagnose in March with a tumor on my sciatic nerve MPNST. They want to remove my whole nerve. So this means always function from my knee down to my foot.  I just want to know if there's any other way that they can do this ? I've heard of other people who have something called drop foot. I was told by the doctors at the Mayo clinic and the U of M  that the Sladich removal was the best option for getting rid of the cancer. I really want a third opinion.  My job requires me to be on my feet all day long. Did this happen to your husband ? can he move his legs or foot?  I hope all is okay with him.  Prayers and hugs for you going through this Awful cancer!

Posts: 2
Joined: Jun 2015

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.

Posts: 1
Joined: May 2016

I just recently found out yesterday that my mother was diagnosed with MPNST.  It's all still very new and I'm still in shock and kind of feel numb to the situation.  As of right now, I don't know the size of the tumor.  However, I do know that it is fairly large.  If I had to guess, it's about 17cm in size.  It is on her upper inner part of her thigh.  If anyone could please just share any stories on what to expect, that will be greatly appreciated.  Prayers and blessing to all.


Mandaclari's picture
Posts: 1
Joined: Aug 2016

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.

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