MPNST?

smylin
smylin Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
I am hoping to find anyone with Malignant Peripheral Nerve Sheath Tumor and find out about their treatment and diagnosis and any alternative diet or supplements they are using. I was born with a genetic disorder called Neurofibromatosis type 1 that sometimes turns malignant. I had 3 large tumors removed from my neck about 2 years ago and have a new one under my jaw that is inoperable. Anyone who knows someone or anyone who has MPNST, please let me know how you are doing and what you are doing. I appreciate your help. I have 6 grown children and 4 grandchildren who are terrified and I am willing to try anything to stay alive and not hurt them or my wonderful husband. Thanks for any help and info you can offer.

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    Hello,

    We are sorry to hear you are going through a difficult time. For more information on your cancer and the possible treatments, we encourage you to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day at 1-800-227-2345.

    Kind regards,

    Your CSN Staff
  • KellyLynne
    KellyLynne Member Posts: 5
    #3
    I had MPNST of the brain an
    I had MPNST of the brain an neck. I am 22 and survivor, I underwent surgeries, chemo and radiation
  • kc1981
    kc1981 Member Posts: 1
    #4
    KellyLynne said:

    I had MPNST of the brain an
    I had MPNST of the brain an neck. I am 22 and survivor, I underwent surgeries, chemo and radiation

    MPNST
    Have you heard of any promising treatments for MPNST? Our son recently had one removed and we're worried about it coming back?
    Thanks
  • neverstoppers23
    neverstoppers23 Member Posts: 1
    #5
    kc1981 said:

    MPNST
    Have you heard of any promising treatments for MPNST? Our son recently had one removed and we're worried about it coming back?
    Thanks

    Hi!
    i am so excited to talk to peopele with this horrific cancer.
    I am a 3 year survivor.
    I was diagnosed when i was 15 years old.
    I had a huge surgery 28 hours long, extreme blood loss, they basically had to take the whole sarcum out, and fuse the l5 and l4. also really bad nerve damage, had perphical nerve damage in my left leg left foot.
    Muscle damage in my back, muscle damage in my legs.

    They acutuallly had to take a muscle from my stomach and put it in my back.

    My tumor was in my lower back pelvis the size of a basketball basically.

    I would like to chat with people who had this, and talk about it, it would be nice to talk to someone who knows what i am going through, myabe some 1 my age?, if you have a son or daugther around 18 i would like to chat with em if they want too. i am sure they would love to chat to some one who knows what it is they are going through.

    i hope people check this often.

    you can email me at jake@student.com
  • daphnie
    daphnie Member Posts: 2
    #6
    kc1981 said:

    MPNST
    Have you heard of any promising treatments for MPNST? Our son recently had one removed and we're worried about it coming back?
    Thanks

    I'm am sorry to hear of your
    I'm am sorry to hear of your sons diagnosis. My husband has been diagnosed with this and has had surgery to remove the tumor and is now undergoing 6 weeks of radiation treatment. Total treatment is 60 gy.
    It is so hard to see him go thru this.
  • sarps3
    sarps3 Member Posts: 4
    #7
    daphnie said:

    I'm am sorry to hear of your
    I'm am sorry to hear of your sons diagnosis. My husband has been diagnosed with this and has had surgery to remove the tumor and is now undergoing 6 weeks of radiation treatment. Total treatment is 60 gy.
    It is so hard to see him go thru this.

    Rare cancer - unusual age
    Daphnie:

    Being the care giver has it's own challenges. I try not to put anything extra on my husbands plate - even the things he usually takes care of I have tried to step up and take the burden from him - he finally told me to knock it off because I was making him feel "sick".

    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
  • Blund
    Blund Member Posts: 1
    #8
    sarps3 said:

    Rare cancer - unusual age
    Daphnie:

    Being the care giver has it's own challenges. I try not to put anything extra on my husbands plate - even the things he usually takes care of I have tried to step up and take the burden from him - he finally told me to knock it off because I was making him feel "sick".

    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

    Me too! Future caregiver...
    Hi. I'm so glad I found this forum! My husband (45) was just diagnosed with MPNST. His problems started Feb 23, and it took almost 2 months to get the diagnosis. (Long story.) He is now a patient at U of M Sarcoma Clinic/Hospital and has had the primary tumor in his small intestine removed. Path report said the margins were clear. He still has a 6cm tumor in his lung. We go back to U of M Hosp on May 6th to discuss treatment options. From what I've read, surgery seems to be done before chemo, but then I've read that this type of cancer doesn't react well to chemo. (?) Also, since it has spread to his lung, I'm wondering if its stage 4, and his survival rate?? So many questions, and so much WAITING!! Sorry, I'm venting a bit.....any comments? I'm spending my days sucked into the internet and sorting throught EOBs and medical bills!!
  • cmayles
    cmayles Member Posts: 1
    #9
    Blund said:

    Me too! Future caregiver...
    Hi. I'm so glad I found this forum! My husband (45) was just diagnosed with MPNST. His problems started Feb 23, and it took almost 2 months to get the diagnosis. (Long story.) He is now a patient at U of M Sarcoma Clinic/Hospital and has had the primary tumor in his small intestine removed. Path report said the margins were clear. He still has a 6cm tumor in his lung. We go back to U of M Hosp on May 6th to discuss treatment options. From what I've read, surgery seems to be done before chemo, but then I've read that this type of cancer doesn't react well to chemo. (?) Also, since it has spread to his lung, I'm wondering if its stage 4, and his survival rate?? So many questions, and so much WAITING!! Sorry, I'm venting a bit.....any comments? I'm spending my days sucked into the internet and sorting throught EOBs and medical bills!!

    i also have mpnst. it was in
    i also have mpnst. it was in the right thigh( 14.3 x 7.9 x 8.1) from nf. i had surgery to remove it, they had to split me from my butt check to the back of my knee, then i did 8 weeks of radiation then a double port put in the chest , then chemo.. i did 5 days in the hospital the first was so bad i was VERY sick i asperated at some point treatment had to be stopped only after 2 days so the 1st one did it count?/ i dont know... lower dose of mensa, doxorubicin and ifosfamide 21 days later better this time i was set to do 5 treatments but on 4 i had to stop i felt like i was loosing my mind dr says think if you want to do 5 if not and it comes back it is an agressive cance dont think it was cause you didnt finish ????? would like to talk and share with any one maylesc@aol.com
  • KellyLynne
    KellyLynne Member Posts: 5
    #10
    kc1981 said:

    MPNST
    Have you heard of any promising treatments for MPNST? Our son recently had one removed and we're worried about it coming back?
    Thanks

    I was treated with 4 cycles
    I was treated with 4 cycles of Adriamycin and Ifex then 4 more cycles of Ifex and VP16 followed by 30 radiation treatments
  • daphnie
    daphnie Member Posts: 2
    #11
    sarps3 said:

    Rare cancer - unusual age
    Daphnie:

    Being the care giver has it's own challenges. I try not to put anything extra on my husbands plate - even the things he usually takes care of I have tried to step up and take the burden from him - he finally told me to knock it off because I was making him feel "sick".

    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

    Hello,
    I have tried not to
    Hello,

    I have tried not to visit websites that are involved with MPNST because I just get to upset.
    My husband is doing really well after surgery and completing his radiation treatments for MPNST.
    It is almost time for another CT scan.I find myself more on edge and feel as tho I need to brace myself.
    I have found that it is so important to take care of myself too during this stressful time in our lives. I have to be healthy and strong emotionally so I can be there to care for him.

    I have only read about the survival rates, his doctor has not said anything other than there will be scans every 6 months and we will go from there. We have been advised that this cancer usually does travel to the lungs.

    Peace to you all,
    Daphnie
  • ihealth
    ihealth Member Posts: 1
    #12
    MPNST
    I am hoping to gather information about chemo on MPNST. I understand they are generally not effective against MPNST, but, in browing the web, I read an article that chemo did work for Epitheliod MPNST for a particular case involving a 62 year old man. The more detailed the info -- size of tumor at diagnosis, type of chemo, the patient's response to the chemo, etc. -- the better it is going to be.

    Maybe with this database, MPNST patients can get more educated about what works and what doesn't.

    I know there are not too many MPNST patients out there. But let's share our treatment experiences together and maybe something constructive will come out of it.

    I thank everyone in advance.

    P
  • jopauche
    jopauche Member Posts: 1
    #13
    ihealth said:

    MPNST
    I am hoping to gather information about chemo on MPNST. I understand they are generally not effective against MPNST, but, in browing the web, I read an article that chemo did work for Epitheliod MPNST for a particular case involving a 62 year old man. The more detailed the info -- size of tumor at diagnosis, type of chemo, the patient's response to the chemo, etc. -- the better it is going to be.

    Maybe with this database, MPNST patients can get more educated about what works and what doesn't.

    I know there are not too many MPNST patients out there. But let's share our treatment experiences together and maybe something constructive will come out of it.

    I thank everyone in advance.

    P

    MPNST
    Hi there. I was diagnosed with MPNST last year and had it removed and had 30 radiation treatments over the course of 6 weeks. The pain is now back in that area and I have to have it checked out. Do you know what kind of checks should be done for this? Have you had any replies from others with MPNST about their treatments experiences?
  • JadeFrancis58
    JadeFrancis58 Member Posts: 2
    #14
    neverstoppers23 said:

    Hi!
    i am so excited to talk to peopele with this horrific cancer.
    I am a 3 year survivor.
    I was diagnosed when i was 15 years old.
    I had a huge surgery 28 hours long, extreme blood loss, they basically had to take the whole sarcum out, and fuse the l5 and l4. also really bad nerve damage, had perphical nerve damage in my left leg left foot.
    Muscle damage in my back, muscle damage in my legs.

    They acutuallly had to take a muscle from my stomach and put it in my back.

    My tumor was in my lower back pelvis the size of a basketball basically.

    I would like to chat with people who had this, and talk about it, it would be nice to talk to someone who knows what i am going through, myabe some 1 my age?, if you have a son or daugther around 18 i would like to chat with em if they want too. i am sure they would love to chat to some one who knows what it is they are going through.

    i hope people check this often.

    you can email me at jake@student.com

    Hi

    I was wondering how you are getting on?

    You must be about 22 now..?

    I am 24 and I have been diagnosed with MPSNT today.

    I have already had 95% removed and I am going back on Friday to have a large section removed from my arm which will be replaced with tissue and skin from my leg. 

    I will loose the use of my arm as it has spread to the main nerve, following that 6 weeks or radiotherapy and then I will have a tendon transplant next year to try and restore the use of my arm. 

    I'm quite shocked and would love to know how you found the treatment and are doing now? 

    Kind Regards,

    Jade :-)

     

  • yah110
    yah110 Member Posts: 2
    #15
    sarps3 said:

    Rare cancer - unusual age
    Daphnie:

    Being the care giver has it's own challenges. I try not to put anything extra on my husbands plate - even the things he usually takes care of I have tried to step up and take the burden from him - he finally told me to knock it off because I was making him feel "sick".

    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

    Hi

    I read your post and was compeled to reply.  My sister has been going through treatments for MPNST for the last 4 years.  Now she is on Votrient and after 2 weeks tere are pissitive results.  I am not sure where your husband is with the lung tumor.  Maybe you should talk to your doctor about Votrient.  This is a medication for soft tissue sarcomas.  Hope everything is well.  Stay strong.

  • yah110
    yah110 Member Posts: 2
    #16
    Votrient for Soft Tissue Sarcomas

    Hi all, I am so sorry you all are going through MPNST.  My sister is also going through MPNST.  She has been battleing three tumors for about 4 years now.  She had radiation and chemotherapy.  Now she is currently on Votrient.  I have been reading online testimonies and this medication and it seems to be quite promissing with favorable results.  It is not a cure for cancer, but it does bring good results to patients with soft tissue sarcomas.  My sister has been on Votrient for 2 weeks and I can say there are signs of positive reactions.  Please research it and talk to your doctor about it. Maybe this can be an option for you.  There are other medications similar to Votrient that can also bring good results.  Let me know if you have any questions.  Although the journey is difficult, stay strong and never give up.  If you personally cannot do the research, have a friend or family member do it for you.  I am doing it for my sister... I will not stop... this is a promise I made to her.  Together we can bring hope with best results.  

  • ksmith2145
    ksmith2145 Member Posts: 1
    #17
    yah110 said:

    Votrient for Soft Tissue Sarcomas

    Hi all, I am so sorry you all are going through MPNST.  My sister is also going through MPNST.  She has been battleing three tumors for about 4 years now.  She had radiation and chemotherapy.  Now she is currently on Votrient.  I have been reading online testimonies and this medication and it seems to be quite promissing with favorable results.  It is not a cure for cancer, but it does bring good results to patients with soft tissue sarcomas.  My sister has been on Votrient for 2 weeks and I can say there are signs of positive reactions.  Please research it and talk to your doctor about it. Maybe this can be an option for you.  There are other medications similar to Votrient that can also bring good results.  Let me know if you have any questions.  Although the journey is difficult, stay strong and never give up.  If you personally cannot do the research, have a friend or family member do it for you.  I am doing it for my sister... I will not stop... this is a promise I made to her.  Together we can bring hope with best results.  

    I set up this account for my husband but upon reading some of the messages it just made him more upset.

    My husband is 36 years old.  As a child he was diagnosed with Neurofibromatosis Type 1.  He never had any issues until recently. 

    Five years ago he went in to the doctor about a neurofibroma growing on his right ankle.  It was not very large at the time but he thought it would be a good idea to get it checked.  It had been a long time since he had any MRI's done so his doctor scheduled him to do some of his brain and spine.  The MRI showed a large tumor on his C1, C2 and they felt that that was more important at the time to remove.  He had the surgery at UCSD in California and it was successful.  The tumor was about the size of a pickle and it was growing up into his brain stem!  There was no malignancy in the pathology report and he recovered well.

    Years have gone by.  The tumor in his ankle has slowly grown and he had an MRI in 2011.  It was impacting his nerves and they didn't want to remove it at the time because it was causing no severe pain. 

    At the end of 2012 the tumor in his ankle was definitely getting bigger and his podiatrist ordered another MRI after an appointment in Feb 2013.  When they got the MRI she advised my husband to go back to his neurologist because she felt that the tumor could be malignant.

    My husband of course made an appointment that month and his neurologist said that it was very unlikely that the tumor was malignant and that if it was bothering him he could take as much out as possible. 

    So after being scared at first we were relieved that we didn't have to deal with him having cancer.

    Months go by...my husband has more MRI's...and finally he is scheduled for a surgery in May 2013. 

    The incision was huge!  The neuro surgeon said they removed as much as they could and we went in once a week to have the team of five doctors inspect the wound.  He was given different antibiotics and told every week to do something different in order for it to heal.  But it wasn't healing like it should. 

    Now we never received the news from the pathology report from his doctor.  And since he's a specialist and he was almost positive that it was not malignant back in Feb we never questioned it.

    My husband went back for a follow up MRI to see how the remainder of the tumor is doing at the end of August 2013 and went in for an appointment at the beginning of Sept 2013 (two weeks ago) and I guess his doctor decided to open up his file and read his pathology report because it stated clearly that the tumor in his ankle was malignant and this information was available to the doctor five days after his surgery in May!!!

    My husband thought he was going in for just a follow up and found out that he has had cancer all along.  So all the times we were there after the surgery not one doctor looked into his file to see if the tumor was malignant.  His doctor didn't even attempt to do a biopsy back in Feb when his podiatrist was afraid that the cells were changing.

    We have now been to see two orthopedic oncologists and an oncologist and the out come is the same.  He has an MPNST.  We have MRI's tomorrow of his foot and leg.  He has two CT scans coming up soon for his lungs and a PET scan to document the other tumors in his body and to make sure the cancer has not spread.

    This type of cancer attacks the lungs.  Chemotherapy is an option but doesn't always work.  If the cancer has not spread his best option is to amputate his leg below the knee because trying to salvage the leg would require up to six surgeries and he probably won't have much use of his foot after that.  And it will be likely that the cancer will come back.

    If the cancer has spread to the lungs and it's only a few small tumors they will be able to remove as much as possible and he will start radiation.  If there are several tumors they will probably not be able to remove much of anything.  He will undergo radiation and he will have a 25% chance of living in the next five years.

    I'm just so tired of waiting.  We have four children; 1 yr old, 2 yr old, 11 yr old, and 14 yr old.  Regardless of what happens this is going to impact our lives greatly.  I don't want to lose my husband.  I don't want my children to lose their father.  If all it is is that he loses a leg then I am fine with that.  

    I just wish there was something else I could do for him. 

     

  • shicks21
    shicks21 Member Posts: 1
    #18
    Doing research too.

    I had a tumor removed about 2 years ago.  It was benign.  It was a schwannoma.  This summer they suggested MPNST when a tumor was found in a new MRI.  At 3 months it is growing, another 2 mm.  Making it 1 cm.  Waiting to do another 3 month MRI, only another week or so to wait now.  In my research, I am learning it should have been monitored to re-occurrance.  Becoming increasing disillusions with the original doctors.  I had to have symptoms to get recheck.  They misdiagnosed the initial tumor prior to surgery.  Surgery did substantial nerve damage to my left optic nerve.  Just for fun, they canges the angle of my astigmatism.  The eye was rotated about 10 degrees.

     

    I am not liking anything I am reading about MPNST.  I have also scheduled a follow up appointment at Johns Hopkins because of issues listed above.  

  • Ehedrick
    Ehedrick Member Posts: 1
    #19
    shicks21 said:

    Doing research too.

    I had a tumor removed about 2 years ago.  It was benign.  It was a schwannoma.  This summer they suggested MPNST when a tumor was found in a new MRI.  At 3 months it is growing, another 2 mm.  Making it 1 cm.  Waiting to do another 3 month MRI, only another week or so to wait now.  In my research, I am learning it should have been monitored to re-occurrance.  Becoming increasing disillusions with the original doctors.  I had to have symptoms to get recheck.  They misdiagnosed the initial tumor prior to surgery.  Surgery did substantial nerve damage to my left optic nerve.  Just for fun, they canges the angle of my astigmatism.  The eye was rotated about 10 degrees.

     

    I am not liking anything I am reading about MPNST.  I have also scheduled a follow up appointment at Johns Hopkins because of issues listed above.  

    Mpnst of the sinus cavity

    You are the first person I have found that has had an MPNST in the head. I was diagnosed last February. I had an MPNSTT of the sinus cavity. 1of maybe 50 people in the world that has had one in the sinus cavity. I had two surgeries and 33 radiation treatments. my third surgery of the year was in December for esotropia of my right eye due to the radiation being so close to my eye it damaged my eye muscle. I am due for my second three month check up but lost our insurance due to my husband being laid off. I am a mom with three small children and I am so nervous about the tumor growing back. I am seeing an ENT and wonder if I should be seeing a sarcoma doctor at MD Anderson since I live in Houston. Anyway, I am just glad I found this forum since this is such a rare cancer. I feel like any advice or hearing other peoples stories will help. 

  • dianern12
    dianern12 Member Posts: 1
    edited March 2020 #20
    mpnst ????

    i have a  lump. on  my arm. its a peripheral nerve sheath tumor.  Im a RN and never heardof this.  Im having a MRI on tuesday but im so frightened.  I have had this lump for years always the same size.  I just started feeling tingly and knumb down to my wrist  when pressure applied or is hit.   so i went to have it loked at.  my surgeion thought it was a lipoma. but the us showed the tumor. i know it is a very good chance its bengin but none the less im scared.  Im awaiting having an MRI.  My surgeon told me its 95 percent benign but he is also the one who said he didnt need the US.  I was just looking on here to get real life stories.  thank you. god bless you all 

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