- Search CSN:
- Members: Login to search all areas
- Not a member? Click here to search public areas
MPNST - Malignant Peripheral Nerve Sheath Tumor
|
|
Feb 25, 2012 - 8:19 pm
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. |
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 ...
Joined: Dec 2011
Hi,
My wife was diagnosed with MPNST 2 years ago (sporadic no