MPNST

godgavemehope
godgavemehope Member Posts: 2
edited March 2014 in Sarcoma #1
I had a MPNST, I was wondering if there was anyone else on this board who had this. My surgery was 28 hours long. Its been 1 year since my surgery, I still have really bad back pain from the spinal fushions they needed to put in, they also they also needed to cut 50 percent of my muscels and nerves in my left leg.I was wondering if anybody else had that type of surgery and if so when did the nerve damage go away also when does the pain go away if ever. BTW i am a 16 year old male.

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  • CIS_Admin
    CIS_Admin Member Posts: 12
    #2
    Hello,

    You may want to do a search of the website (using key words from your diagnosis or treatment and putting them in the search bar at the top of this page). You can also do a search of the personal web pages, by clicking on "Personal Web Pages" on the left hand side of this page. If you find someone you would like to contact, you can do so through the internal CSN email system.

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    Take care and be well,

    Dana
    CSN Dana
  • sarps3
    sarps3 Member Posts: 4
    #3
    CIS_Admin said:

    Hello,

    You may want to do a search of the website (using key words from your diagnosis or treatment and putting them in the search bar at the top of this page). You can also do a search of the personal web pages, by clicking on "Personal Web Pages" on the left hand side of this page. If you find someone you would like to contact, you can do so through the internal CSN email system.

    For more information on all of the CSN function, click on the "Help" link at the top of this page.

    Take care and be well,

    Dana
    CSN Dana

    Rare cancer - unusual age
    My husband noticed a small lump under his left arm on November 13th last year, by the time he went in for surgery on December 8th the lump had grown to baseball size. It took nearly 2 weeks and two pathology reports to diagnose high grade MPNST - my husband is 56 - great a rare cancer that no one his age gets so how do you treat that, seems like a darn crap shoot to us. We have asked and there isn't much information out there about MPNST or studies that say this IS what you do so Mike decided he wanted to hit it HARD.

    Mike has been through 3 rounds of in-patient chemo - 6 days with 120 hours of constant infusion of Adriamylin and Ifosfamide - and yesterday he had a second surgery to clean up the "margins" from his 1st surgery. So far all of his scans (MRI, CT, Pet) have been clear. He will have 2 - 3 more rounds of chemo followed by 5 weeks of daily radiation.

    We have been told that his "odds" for survival are 45-50% after 5 years.

    What experiences have you all had with treatments, re-occurrence, length time you have been cancer free?

    There is so little information on this cancer so I really appreciate your willingness to share.

    Thanks
  • davehull
    davehull Member Posts: 8
    #4
    sarps3 said:

    Rare cancer - unusual age
    My husband noticed a small lump under his left arm on November 13th last year, by the time he went in for surgery on December 8th the lump had grown to baseball size. It took nearly 2 weeks and two pathology reports to diagnose high grade MPNST - my husband is 56 - great a rare cancer that no one his age gets so how do you treat that, seems like a darn crap shoot to us. We have asked and there isn't much information out there about MPNST or studies that say this IS what you do so Mike decided he wanted to hit it HARD.

    Mike has been through 3 rounds of in-patient chemo - 6 days with 120 hours of constant infusion of Adriamylin and Ifosfamide - and yesterday he had a second surgery to clean up the "margins" from his 1st surgery. So far all of his scans (MRI, CT, Pet) have been clear. He will have 2 - 3 more rounds of chemo followed by 5 weeks of daily radiation.

    We have been told that his "odds" for survival are 45-50% after 5 years.

    What experiences have you all had with treatments, re-occurrence, length time you have been cancer free?

    There is so little information on this cancer so I really appreciate your willingness to share.

    Thanks

    Seems I'm in the same boat
    Seems I'm in the same boat in terms of trying to find info and people to connect with about MPNST. Mine was in my pelvis - they were only able to get 75% of it with surgery - so I'm about to start radiation and chemo (not sure which drugs and frequency). Please let me know if you've been able to find anything else out about this rare cancer. I'd love to connect with you. I hope all is well with your husband!
  • jthom75
    jthom75 Member Posts: 3
    #5
    davehull said:

    Seems I'm in the same boat
    Seems I'm in the same boat in terms of trying to find info and people to connect with about MPNST. Mine was in my pelvis - they were only able to get 75% of it with surgery - so I'm about to start radiation and chemo (not sure which drugs and frequency). Please let me know if you've been able to find anything else out about this rare cancer. I'd love to connect with you. I hope all is well with your husband!

    Has anybody had success fighting this thing?

    I am a 34 yo male in South Florida. I had 5 malignant peripheral nerve sheath tumors removed from my lower abdominal and pelvic area about 2 months ago.1 was the size of a basketball and the others 3-5 centimeters. Since then have been to the university of Miami and had the pathology redone and have seen a doctor that is ( from what Ive been told ) the only expert in this area in Florida.He came here from Sloan Kettering in NY. He told me that because of the location of the tumors radiation was not an option and that chemo would be extremely toxic and is not proven to have any effect on this type of tumor. I have a history of tumors . I have had 2 astrocytomas ( benign )removed from my brain-stem at the age of 5 and 12 and varying diagnosis of neurofibromatosis.
    Ive been told that all we can do is surgically remove anything that arises and have ct scans every 2 months.
    Everything I read on the web on this seems to be what Ive already been told.
    I really need the help of someone that is going through this or has found hope through treatment that may help me.

    Thank
  • sarps3
    sarps3 Member Posts: 4
    #6
    davehull said:

    Seems I'm in the same boat
    Seems I'm in the same boat in terms of trying to find info and people to connect with about MPNST. Mine was in my pelvis - they were only able to get 75% of it with surgery - so I'm about to start radiation and chemo (not sure which drugs and frequency). Please let me know if you've been able to find anything else out about this rare cancer. I'd love to connect with you. I hope all is well with your husband!

    MPNST
    Hi Dave:

    Mike's cancer metastasized to his small intestine and then to the muscle in his back. He had the surgery in his intestine removed mid-November and the one in his back mid-December. The opinion of his oncologists is that further radiation of these secondary sites is not proven to be of much help and is better saved in case he later needs something site specific. He started Temodar on January 4th and the plan is for him to do 6 rounds with the oral chemo. The anti-nausea drugs are great and Mike has been able to stay to a fairly normal routine although he gets very tired further into the day's activities.

    Once theses tumors have spread to distant sites the prognosis is poor but I have been reading posts on other sites of those who have survived 5 - 10 years. It seems the biggest area of research right now is with tyrosine kinase inhibitors - there are several different drugs, each working on a different type of sarcoma. Unfortunately not one for MPNST.

    I am in communication, via my hot mail account just add that to my user name here, with another couple and he has MPNST in his pelvis. They have delayed surgery and are using radiation to try and shrink the tumor 1st. They are in Texas and have gone to MD Anderson where he was told that chemo was not effective. At Fred Hutch (Seattle Cancer Care Alliance) we were told that the percentage of effectiveness of any chemo drug on MPNST was pretty low(20-30%)but the way Mike and I look at it there are so few people testing these waters that it is truly a crap shoot and you just have to try and gather as much info as possible and then make a choice about the path that sounds the most reasonable to you.

    I sure hope you keep up the fight.

    Sandi
  • sarps3
    sarps3 Member Posts: 4
    #7
    davehull said:

    Seems I'm in the same boat
    Seems I'm in the same boat in terms of trying to find info and people to connect with about MPNST. Mine was in my pelvis - they were only able to get 75% of it with surgery - so I'm about to start radiation and chemo (not sure which drugs and frequency). Please let me know if you've been able to find anything else out about this rare cancer. I'd love to connect with you. I hope all is well with your husband!

    MPNST
    Hi Dave:

    Mike's cancer metastasized to his small intestine and then to the muscle in his back. He had the surgery in his intestine removed mid-November and the one in his back mid-December. The opinion of his oncologists is that further radiation of these secondary sites is not proven to be of much help and is better saved in case he later needs something site specific. He started Temodar on January 4th and the plan is for him to do 6 rounds with the oral chemo. The anti-nausea drugs are great and Mike has been able to stay to a fairly normal routine although he gets very tired further into the day's activities.

    Once theses tumors have spread to distant sites the prognosis is poor but I have been reading posts on other sites of those who have survived 5 - 10 years. It seems the biggest area of research right now is with tyrosine kinase inhibitors - there are several different drugs, each working on a different type of sarcoma. Unfortunately not one for MPNST.

    I am in communication, via my hot mail account just add that to my user name here, with another couple and he has MPNST in his pelvis. They have delayed surgery and are using radiation to try and shrink the tumor 1st. They are in Texas and have gone to MD Anderson where he was told that chemo was not effective. At Fred Hutch (Seattle Cancer Care Alliance) we were told that the percentage of effectiveness of any chemo drug on MPNST was pretty low(20-30%)but the way Mike and I look at it there are so few people testing these waters that it is truly a crap shoot and you just have to try and gather as much info as possible and then make a choice about the path that sounds the most reasonable to you.

    I sure hope you keep up the fight.

    Sandi

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