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Peripheral Nerve Sheath Tumors

MPNST
Posts: 4
Joined: May 2008

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). Please contact me, I really would like to speak with you. Thanks.

colsie
Posts: 24
Joined: Dec 2004

I can't speak about that type of sarcoma but a friend of mine has an angiosarcoma in his heart. Firstly as much of the tumour as possible was removed, then about 7 rounds of chemo every 4 weeks, now they are talking surgery again but he has opted to try a type of acupuncture in Santa Monica which is having excellent results but not well publicized. Might be worth looking into.

kellbelle834
Posts: 2
Joined: Aug 2008

Hello,
My husband was diagnosed with MPNST in 2005. It has recurred 5 times. We are a young couple in our mid twenties and we have a little girl who is 18 months old. I just joined this website and this is the most recent posts I found so far here. Its 1:00 am in Houston Texas. He starts round 4 of chemo tomorrow and I have been on a surfing rampage. Where are you getting treatment?? We are from Michigan and here in Houston at MD Anderson in hopes to cure this rare cancer. He has it in the Head Neck area and lost his right ear and all movement of his right side of the face. We are waiting to see if he can get surgery again because the chemo doesn't look to be helping right now. He was in remission for the longest time ( YEAR AND A HALF) until May 30 of this year. Since then we have been back and forth to Houston. Please write me back because I have been looking for others with the same cancer too. I don't know why I didn't join this website sooner.

Keljo1991
Posts: 3
Joined: Nov 2008

I was diagnosed with MPNST last November. I had a baseball sized tumor on my vagas nerve in my chest. The tumor had pushed against my lung and partially collapsed it.

I had surgery (sternotomy) to remove the tumor Novemeber 4, 2007. The pathology came back on November 29th that it was a high grade MPNST. Fortunately, the surgeon was able to get the entire tumor and it had not appeared to invade any nearby tissue. He said it was just growing off the nerve and pushing everything out of it's way.

I began radiation on Dec 26, 2007, cpmpleted it on Feb 8, 2008. I had a CT scan done on Nov 14 2008 and I am still cancer free.

KLBeers2009
Posts: 1
Joined: Jun 2009

My Mom (69) has just been diagnosed with MPNST originating from her sciatic nerve. This is following the removal of a grapefruit size non-malignant scwannoma from her sacrum less than 9 months ago. She is in Houston and has just started proton therapy (will recieve for 20 days) and 3 rounds of ifosfamide chemo. She has several tumors on the sciatic nerve that has resulted in loss of function of her leg, as well as several small spots on her lungs. We are seeing the same results from internet searches that there just isn't enough info on this type of cancer. I am very hopefull that the quick diagnosis and immediate startment of treatment will help her recover from this. I wish everyone who is also going through this strength and prayers.

davehull
Posts: 7
Joined: Aug 2009

Hi - I wanted to let you know that I was just diagnosed with an aggressive MPNST - it was golfball sized, bt also located on my sciatic nerve in my pelvis. I set to start radiation in the next month and potentially receive chemotherapy thereafter. I stumbled on this site, seemingly much like you - seeking anyone who might know more about this rare form of cancer. I'm 32 have 2 kids under 4. I'm seeing a great doctor at U Penn - Dr. Staddon - but am certainly looking to connect with anyone else who has a more personal account of what I can expect.

Thanks.

PeterTN
Posts: 1
Joined: Oct 2009

I was just diagnosed with MPNST. Surgeon at a regional hospital removed what he at first was thinking would be a benign enlarged lymph node in my groin. The Vanderbilt Cancer Center pathologists have identified as MPNST.

I'm curious to know if anyone had second opinion pathology reports performed, or investigated second opinions on treatment plans.

Also, the surgical oncologist that I met with at Vanderbilt biopsied a place on my heel. It came back as melanoma, so I'm fighting two cancers right now.

Dave, I'm particularly interested in how your treatments are going, since it looks like your course of diagnosis/treatment is about 4-6 weeks ahead of mine. I have surgery scheduled on Oct 21 to take out wide margins. What follows is not yet determined. I have PET scans and MRIs scheduled for tomorrow Oct 9 to see if any spread beyond primary tumor sites.

Any good sources of info on MPNST appreciated. I just turned 50, live on a farm in the country, and have a wonderful wife and two daughters age 7 and 11. I've been running 5k's for the last few years and managing to be fairly competitive in my age group, so looking forward to getting back to that as soon as possible.

jthom75
Posts: 3
Joined: Dec 2009

I had 5 mpnst's removed about 2 months ago. I have been doing research of my own as I wanted more information than my doc could give me. I had the pathology redone at UM Sylvester in miami and it came out the same as the initial diag. This website I found is kind of technical but you may be interested.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2526168/
I hope you are doing well and wish you the best.

kansashotmomma
Posts: 3
Joined: Jan 2010

My mom was diagnosed 15yrs ago with a mpnst after several relapses it has finally moved into her lymph nodes and is being cared for by hospice. Many rounds of chemo and radiation and she has lived much longer than they ever expected her to. Now I am suffering with the same type of tumor. Also on my sciatic nerve. Good luck and god bless

imhappy
Posts: 3
Joined: Apr 2010

Hello,

I am just writing to mention a site that may be helfpul? Or you can google it cottage cheese flax seed protocol by Johanna Budwig. She was a german Dr. lived to be 90 something and has all the credentials, etc. Anyway, a friend of mine was healed from his cancer using this protocol along with the diet, following the diet to a T for ten months and doing the golden organic whole flaxseed freshly ground in a blender or preferably coffee grinder (can get one for $#10 a Kroger) and low fat cottage cheese mixed in the grinder/blender too. Eaten within ten minutes.... he no longer has cancer.

I could say so much more, but I have told so many people and so many are not interested. So, I am just counting on if you are at all interested you will email me or google or visit the site healingcancernaturally.com Budwig protocol

If you have any questions I would love to help and answer anything I could.

I pray God will lead you to what HE would have you to do.

I am so sorry for your suffering and pain... I simply can only imagine and then I still come short.

God bless you!!

ipshita
Posts: 2
Joined: May 2011

your mother's 15 years survival story is really something I was looking for! It really did bring some hope for me. because i was told by doctors, chances of my survival were 70% for a year and it comes down to only 30% over 5 years time. It kind of shook me to my core!

Hisfaith
Posts: 1
Joined: Aug 2011

15 years. wow. what treatments did she have?

i am sorry you have this terrible disease, as well.

can you have surgery to remove the tumor?

aykt36
Posts: 28
Joined: Jun 2010

thanks

kylescheersmom
Posts: 4
Joined: Jan 2011

My son, who was just starting his second year of college, has the exact same diagnosis and had a 11.5 cm tumor removed from his pelvis as well. The prognosis scares the daylights out of me!

Diddle08
Posts: 1
Joined: Mar 2011

My dad 43 of age was just got diagnosis with malignant peripheral nerve sheath tumor, in is lower left arm! They removed the tumor Feb 10 that they said was not cancer. it came back a month later! He said he wasnt going back! he was gonna deal with it! well about a month 1/2 ago...He stated to fell numbness is him fingers. So he finally when back to the Drs..well she didnt like how it grew back and how much bigger its was this time so she sent him to Washington Cancer center...Well The took it out it wasnt just 1 it was 3 this time..& the one was growin into is muscle. So they had to take some of his muscle out & some fatty tissue..Well they sent that off and it was Cancer(malignant peripheral nerve sheath tumor) The dr said that there was NO way that the first time the other dr took it out that it wasn't cancer!! He just had another surgery 3/11/11 to take more out more muscle, fatty tissue and i don't know what else, they removed A LOT more this time! there was no tumor this time they just wanted to try to take some stuff out to get rid of the cells..Well they sent what they took out and it came back there was no cancer in that! so now he just had another surgery 3/16/11 to do a skin graph bc where they took that stuff out of his arm its basically a whole in his arm! So he is still in the hospital now they got to make sure that they skin graph takes! Then when he heals from thos surgeries he will start radiation, 5days a week. I do not know how long..So i am praying it doesn't come back..she said they will monitor him very closely to make sure it DOSE NOT go to his lungs! then after 2years if it hasn't come back they will expand is visits.. they said as long as it don't come back within 5years he should be okay! i hope it goes away and NEVER comes back..I am 21years of age..My dad has 4 kids me, my 2 sisters 17& 14 and my bother 10..i am the oldest of us 4!And he has to grand baby's my son and daughter under 2 years of age! i have been taking this really bad about my dad! they said this is a very aggressive cancer! i will keep every one in my prayers! & hope everyone who has this cancer(& other cancers) gets threw this! we are all trying to be strong for my dad! & keep his faith up!

angelernst
Posts: 1
Joined: Mar 2011

HI. I was just wondering how long the tumor had been there before the doctors found it? I was recently diagnosed with a nerve sheath tumor in the arch of my foot. I have been in sevre pain for ten years now, with no one being able to find the tumor until recently. It is a 6sm tumor. the doctors haven't discussed th epossiblity of cancer yet, but I have been doing my research. So far I have scared myself to death. I am just looking for some other information about these tumors.

ipshita
Posts: 2
Joined: May 2011

I've been having some really bad pains in my right fore arm since late january this year (2011). AIso I felt a small lump in my right forearm. then I went to my GP (general practitioner). After Ultrasound, CT scan, MRI surgeons decided to bring me under knife. My first surgery was on the 11th April, 2011. Right after the Easter holiday, I hear on my next appointment (29th of April) with the surgeon, that my tumour is a malignant one. I have malignant nerve sheath tumour!! it's also called Neurofibrosarcoma. I was scheduled for my next surgery within 2 days of time. this time they took out my whole ulnar nerve and some muscles too. Now i'm recovering from my surgical wounds and starting my Radio therapy from next week (1st of June,2011). the radio therapy wil be going on for 5 weeks, daily for 15 mins, monday-friday.After that I'll be starting Chemo for 5 months! due to which i was told, I'm gonna lose all my hair and everything. it could effect my fertility as well. Being only 23, and having this rare type of nasty cancer, it all seems really difficult to me. Sometimes I just can't accept that all of this is really happening to me. The poor prognosis is really scary!! so yes, positive stories from people with same condition would be really encouraging.

greenet29
Posts: 1
Joined: Sep 2011

I just had a biopsy on my right cheek, and came back as MPNST. Anyone heard of it on the face, and what types of treatments are available.

Trying to set up appointments at MDAnderson in Houston.

grice24
Posts: 1
Joined: Apr 2013

My 19 yr old son was diagnosed with a nerve sheath tumor that is affecting the left side of his face.  We have been told that surgery will probably destroy what function he has left. Is there any treatment that you know of that will help him?

Alilynne
Posts: 1
Joined: May 2013

My husband was diagnosed with the same cancer in 2011.  The tumor showed up on the underside of his left arm, near the hand.  He was treated immediately at UPenn, by the very doctor who spearheaded the new treatment option of massive radiation to shrink the tumor, before surgicallly removing it.  CAT Scans showed 2 granulomas in his lungs, and a spot on his knee.  Neither of these were biopsied and I don't know why, in hindsight.  He underwent a total of 5 surgeries: the one to remove the tumor took 10 hours.  Other surgeries were cosmetic, to repair his arm with skin grafts from his thigh.  The massive radiation he recieved caused a systemic fungal infection, which no doctor ever addressed.  He was told to return for more tests every 6 months, on his lungs and his knee, and he did this for the first year and a half but then decided not to undergo any more as his fungal infection was out of control and all of his attempts to build his immune system back would be destroyed by more radiation from x-rays.

My husband (his name was Chuck), spent thousands of hours researching fungal infections, and changed everything in his diet and intake of any and everything, to combat the infection.

Over the winter of 2013 he started experiencing back pain, which he thought was a pinched nerve, as he had a very bad back, and a cough, which he thought came from the die off of the fungal infection.  The pain worsened, as did his cough, throughout February and in March of this year I took him to the ER, where they ran a CAT Scan and found a massive tumor in his left lung, with a smaller one in his right lung that had collapsed the bottom 1/3 of the lung.  He was hospitalized and more tests run.  On our own, we found large tumors in both legs, his groin and his pelvis and treatment was no longer an optiion, so we called hospice.

He died 3 weeks later, his body riddled with cancer.  It was a complete nightmare and I'm devastated by his death, as he was the love of my life.

Yes, we chose not to continue the 6 month check-ups, but, as we were told by the doctor who recently diagnosed him, it would have been chasing tumors.  These doctors were astonished that the granulomas weren't biopsied initially.  Had the cancer been diagnosed upon its' return, we would have been fully involved in the nightmare round of chemo/radiation/surgery until there was nothing left to do, and he died anyways.

Instead, we continued our lives as soon as the surgeries were done.  We were told that if the cancer showed up again it would be in his lungs, and they were right (which makes me question yet again why they didn't biopsy the granulomas.  They said they could be scars from pneumonia or bronchitis, neither of which Chuck had ever had, but apparently that didn't raise a flag).  And we were told that there was a 98% chance that he was cancer free and it wouldn't return.

We'd sold our home and most of our belongings before his cancer happened, and went on the road, traveling the country, calling ourselves Happily Homeless.  We stayed put for his surgeries when the inital cancer showed up, and were all the way across country when it reappeared.  Chuck was dead within 3 weeks but we documented every horrible, beautiful, moment of his illness and death and shared it with our family and friends across the country. 

I don't know why they didn't biopsy his lungs.

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