peripheral nerve sheath sarcoma

surfnbeachbaby
surfnbeachbaby Member Posts: 1
edited March 2014 in Sarcoma #1
anyone know of it or have it? know of any treatments?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to consider contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists can assist you with your questions. They can be reached 24 hours a day at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

    Take care and be well,

    Dana
    CSN Dana
  • kojack
    kojack Member Posts: 1
    #3
    my boyfriend was just diagnosed a week ago with high-grade malignant peripheral nerve cancer.he was missed diagnosed for about 8monthes. the docs now tell him that this is such a rare cancer and he most deffinatly will get his right arm amputated. we live in vancouver canada and we would like to get second opinion from a spealist. anyone know where we can find someone who is an expert in these rare cancers.
  • climbermc
    climbermc Member Posts: 2
    #4
    hi surfnbeachbaby
    just writen to see how u r doing
    hope u r doing well
    just seen this and thought i would just say hello
  • Rector1
    Rector1 Member Posts: 2
    #5
    kojack said:

    my boyfriend was just diagnosed a week ago with high-grade malignant peripheral nerve cancer.he was missed diagnosed for about 8monthes. the docs now tell him that this is such a rare cancer and he most deffinatly will get his right arm amputated. we live in vancouver canada and we would like to get second opinion from a spealist. anyone know where we can find someone who is an expert in these rare cancers.

    My husband had a peripheral nerve sheith tumor in his right arm. He had the tumor removed 7/2004. It left his arm useless but they did tendon transferes and he regained most of the use of his hand. The peripherals where clear and we thought we were done. This year it returned in the same spot growing rapidly. The doctor called and said to get the arm amputated...end of call. We found a cancer center and sought out a specialist. He confirmed the need for amputation. When we saw the first doctor we said if there was a chance of the cancer spreading to amputate and were told it was not necessary. After the amputation we adjusted our lives and I felt lucky, to have him. Some of him was better than none of him. Less than 3 months later they found that it has metasised (sp?) to his lungs. He has had a thoracotomy to remove the nodules from his left lung...Now he is in intensive chemo, 2 drugs 5 days a week, every 3 weeks, for 5 sessions. Then another surgery on the other lung. We have already been told there is no cure, just extension. So many times I think that if only they had amputated. Watching him go through the chemo is much harder than the loss of his arm. And I was right...some of him would be better than none of him. So God be with you, when you make your decisions. This is a very agressive cancer.
    Dee
  • MPNST
    MPNST Member Posts: 4
    #6
    Rector1 said:

    My husband had a peripheral nerve sheith tumor in his right arm. He had the tumor removed 7/2004. It left his arm useless but they did tendon transferes and he regained most of the use of his hand. The peripherals where clear and we thought we were done. This year it returned in the same spot growing rapidly. The doctor called and said to get the arm amputated...end of call. We found a cancer center and sought out a specialist. He confirmed the need for amputation. When we saw the first doctor we said if there was a chance of the cancer spreading to amputate and were told it was not necessary. After the amputation we adjusted our lives and I felt lucky, to have him. Some of him was better than none of him. Less than 3 months later they found that it has metasised (sp?) to his lungs. He has had a thoracotomy to remove the nodules from his left lung...Now he is in intensive chemo, 2 drugs 5 days a week, every 3 weeks, for 5 sessions. Then another surgery on the other lung. We have already been told there is no cure, just extension. So many times I think that if only they had amputated. Watching him go through the chemo is much harder than the loss of his arm. And I was right...some of him would be better than none of him. So God be with you, when you make your decisions. This is a very agressive cancer.
    Dee

    My husband was diagnosed in March 2008 with high grade stage 3 aggressive Malignant Peripheral Nerve Sheath Tumor/soft tissue sarcoma a month AFTER the grapefruit sized tumor was surgically removed from his sciatic nerve in his pelvis. My husband is now undergoing chemotherapy with plans to have radiation too. I'm looking for others who have or have had this diagnosis, or others who are recovering from treatment from this diagnosis, or people who have a loved one who's has or had one of these nasty tumors. Most of the cases I've heard of have been in someone's limb. I'd like to hear your stories and discuss ours if you'd like. This is a rare form of sarcoma, with sarcoma being rare anyway, it's difficult to find anyone to talk to that has or has had a Malignant Peripheral Nerve Sheath Tumor (MPNST).
  • davehull
    davehull Member Posts: 8
    #7
    MPNST said:

    My husband was diagnosed in March 2008 with high grade stage 3 aggressive Malignant Peripheral Nerve Sheath Tumor/soft tissue sarcoma a month AFTER the grapefruit sized tumor was surgically removed from his sciatic nerve in his pelvis. My husband is now undergoing chemotherapy with plans to have radiation too. I'm looking for others who have or have had this diagnosis, or others who are recovering from treatment from this diagnosis, or people who have a loved one who's has or had one of these nasty tumors. Most of the cases I've heard of have been in someone's limb. I'd like to hear your stories and discuss ours if you'd like. This is a rare form of sarcoma, with sarcoma being rare anyway, it's difficult to find anyone to talk to that has or has had a Malignant Peripheral Nerve Sheath Tumor (MPNST).

    I have the same thing as your husband!
    I really hope to hear from you - I have the exact same thing - my sciatic nerve tumor was only golf ball sized - but this is definitely no fun. Sounds like I'll be going on the same - or similar chemo treatments as your husband and am starting radiation very soon. I can't find anyone who's had this cancer and it seems extremely rare. I really hope that all is well with you and your husband - so many of the posts on here seem so dire - I would love to hear some good news (but don't not write if there isn't good news - I still would love to connect with someone who knows what I'm going through).
  • Unknown
    Unknown
    #8
    This comment has been removed by the Moderator
  • Anais.1
    Anais.1 Member Posts: 1
    #9
    Rector1 said:

    My husband had a peripheral nerve sheith tumor in his right arm. He had the tumor removed 7/2004. It left his arm useless but they did tendon transferes and he regained most of the use of his hand. The peripherals where clear and we thought we were done. This year it returned in the same spot growing rapidly. The doctor called and said to get the arm amputated...end of call. We found a cancer center and sought out a specialist. He confirmed the need for amputation. When we saw the first doctor we said if there was a chance of the cancer spreading to amputate and were told it was not necessary. After the amputation we adjusted our lives and I felt lucky, to have him. Some of him was better than none of him. Less than 3 months later they found that it has metasised (sp?) to his lungs. He has had a thoracotomy to remove the nodules from his left lung...Now he is in intensive chemo, 2 drugs 5 days a week, every 3 weeks, for 5 sessions. Then another surgery on the other lung. We have already been told there is no cure, just extension. So many times I think that if only they had amputated. Watching him go through the chemo is much harder than the loss of his arm. And I was right...some of him would be better than none of him. So God be with you, when you make your decisions. This is a very agressive cancer.
    Dee

    mpnst
    Hi there
    I wondered how your husband had fared. I had an mpnst removed from my neck in Jan and a secondary from my lung in Feb, and 33 sessions head and neck radiation. My ct scans are clear, and my oncologist is happy, but the second opinion I went for is urging a similar chemo regime, 6 sessions of 21 days, 5 days in hospital. I am reluctant to chemo a healthy disease free body, but worried about microscopic growth manifesting. do you have any advice.
  • anna d
    anna d Member Posts: 1
    #10
    Anais.1 said:

    mpnst
    Hi there
    I wondered how your husband had fared. I had an mpnst removed from my neck in Jan and a secondary from my lung in Feb, and 33 sessions head and neck radiation. My ct scans are clear, and my oncologist is happy, but the second opinion I went for is urging a similar chemo regime, 6 sessions of 21 days, 5 days in hospital. I am reluctant to chemo a healthy disease free body, but worried about microscopic growth manifesting. do you have any advice.

    mpnst
    Hi there

    I just want to tell you that Chemo for this cancer is not useful. I had chemo for 4 rounds and each time I was in hospital for 4 days having 72hours of constant chemo. It did nothing to shrink the tumor and I almost died after the fourth round. I had a tumor on the right flank just near my lower rib. I had surgery in april and it was removed along with two ribs. The margins were clear. I have had no further treatment but need to see dr tomo for a check up. How r u going now?

    Hope that answers your question

    All the best

    Annas
  • Maddy_Moo
    Maddy_Moo Member Posts: 1
    #11
    Spindle Cell Nerve Sheath Sarcoma
    Hi All,

    Am wtiting this to seek your help.

    My 13 year old daughter has just been re diagnosed with a nerve sheath tumour in both her right arm and lung.

    This is the second recurrence after having an initial sarcoma removed from the same arm 2 years ago.

    She under went 32 rounds of radiation to the arm followed by chemo treatment of Doxirubicen,ifosimide and Vincrystine.

    The chemo was very intensive and we almost lost her due to temperatures and infection.

    We have just been advised to operate on the lung and amputate the arm followed by a similar chemo protocol along with stem cell something.

    Just don't know what to do or which way to go.

    Any comments would be much appreciated.
  • mpd0353
    mpd0353 Member Posts: 8
    #12
    davehull said:

    I have the same thing as your husband!
    I really hope to hear from you - I have the exact same thing - my sciatic nerve tumor was only golf ball sized - but this is definitely no fun. Sounds like I'll be going on the same - or similar chemo treatments as your husband and am starting radiation very soon. I can't find anyone who's had this cancer and it seems extremely rare. I really hope that all is well with you and your husband - so many of the posts on here seem so dire - I would love to hear some good news (but don't not write if there isn't good news - I still would love to connect with someone who knows what I'm going through).

    Update
    I just came across your post and I am trying so hard to get more information on this type of cancer. My husband was diagnosed 3 years ago with MPNST of sciatic nerve and recently (this week) after his latest MRI we have been told he has had a local reoccurance. We are going back to Mass General Monday to see what the next step is although I believe we already know. I am interested to hear about the path this cancer has led you on and to see how you are fairing now. Thoughts and prayers with you and all others fighting this diagnosis.
  • davehull
    davehull Member Posts: 8
    #13
    mpd0353 said:

    Update
    I just came across your post and I am trying so hard to get more information on this type of cancer. My husband was diagnosed 3 years ago with MPNST of sciatic nerve and recently (this week) after his latest MRI we have been told he has had a local reoccurance. We are going back to Mass General Monday to see what the next step is although I believe we already know. I am interested to hear about the path this cancer has led you on and to see how you are fairing now. Thoughts and prayers with you and all others fighting this diagnosis.

    MPNST survivor
    Feel free to contact me directly at - davehull1@mac.com

    Hope your appointment on Monday went well. I had all my treatments and surgeries at U Penn and Memorial Sloan Kettering.

    Hope to hear from you soon.
  • lcb1966
    lcb1966 Member Posts: 4
    #14
    MPNST said:

    My husband was diagnosed in March 2008 with high grade stage 3 aggressive Malignant Peripheral Nerve Sheath Tumor/soft tissue sarcoma a month AFTER the grapefruit sized tumor was surgically removed from his sciatic nerve in his pelvis. My husband is now undergoing chemotherapy with plans to have radiation too. I'm looking for others who have or have had this diagnosis, or others who are recovering from treatment from this diagnosis, or people who have a loved one who's has or had one of these nasty tumors. Most of the cases I've heard of have been in someone's limb. I'd like to hear your stories and discuss ours if you'd like. This is a rare form of sarcoma, with sarcoma being rare anyway, it's difficult to find anyone to talk to that has or has had a Malignant Peripheral Nerve Sheath Tumor (MPNST).

    Hello

    I am wondering how your husband is doing.  This original post about his diagnosis was from May 2008.  My husband was diagnosed in October 2010.  His tumor was 35cm x 11cm x 17cm and in the pelvis area as well.  He made it through it.  But in 2012 it has come back locally in the right hip twice.  He just finished another round of radiation and will find out the next step in February 2013.  I would like to talk to someone else who has been dealing with this this type of tumor longer than him.  I don't know what to expect or anything.  We didn't know the actual type of sarcoma until it came back last year in his hip. 

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