MPNST - Malignant Peripheral Nerve Sheath Tumor
Comments
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MPNST
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 ...0 -
Hi,
My wife was diagnosed with MPNST 2 years ago (sporadic no NF). It occurred in her lower right leg and was large enough that the doctors felt it necessary to perform a below the knee amputation. We were told that they had achieved clean margins and that she would have to be scanned every three months. They scanned the area where the amputation occurred and her lungs as this is where the disease tends to show back up if it does. It was less than a week after her second scan and "clean bill of health" diagnosis that she found a large lump on her upper thigh. After a fine needle biopsy it was confirmed that the disease has returned via he lymphatic system (from what I understand this is pretty rare). Additional scans were performed and confirmed lung metastasis as well. They recommended Chemo. 7 rounds of MAID therapy, followed by surgery to remove the lung nodules and the tumor from her thigh. After surgery she also received radiation to her upper thigh.
6 months later the cancer returned to her lungs. It was actually there during the first scan after surgery, but it was so small the doctors couldn't see it. After comparing her next follow up scan to the previous they could see tumor growth. she had surgery (this time laproscopic) to remove the three they could see on the scan. They found another two while they were in there. her first follow up scan is at the end of March, so we've got our fingers crossed. I wish I had a better story to share with you, but all we seem to hit are setbacks. Chemo has not worked, radiation, surgery. We'll be looking at clinical trials if it shows up again.0 -
MPNST survivortgwih said:Hi,
My wife was diagnosed with MPNST 2 years ago (sporadic no NF). It occurred in her lower right leg and was large enough that the doctors felt it necessary to perform a below the knee amputation. We were told that they had achieved clean margins and that she would have to be scanned every three months. They scanned the area where the amputation occurred and her lungs as this is where the disease tends to show back up if it does. It was less than a week after her second scan and "clean bill of health" diagnosis that she found a large lump on her upper thigh. After a fine needle biopsy it was confirmed that the disease has returned via he lymphatic system (from what I understand this is pretty rare). Additional scans were performed and confirmed lung metastasis as well. They recommended Chemo. 7 rounds of MAID therapy, followed by surgery to remove the lung nodules and the tumor from her thigh. After surgery she also received radiation to her upper thigh.
6 months later the cancer returned to her lungs. It was actually there during the first scan after surgery, but it was so small the doctors couldn't see it. After comparing her next follow up scan to the previous they could see tumor growth. she had surgery (this time laproscopic) to remove the three they could see on the scan. They found another two while they were in there. her first follow up scan is at the end of March, so we've got our fingers crossed. I wish I had a better story to share with you, but all we seem to hit are setbacks. Chemo has not worked, radiation, surgery. We'll be looking at clinical trials if it shows up again.
I was diagnosed with a 5cm, high grade MPNST (sporadic - no NF) in my sciatic nerve almost 3 years ago now. The tumor was deep in my pelvis, just off my spine - but it responded to chemotherapy and shrunk considerably. I had radiation and then a full surgical resection of the tumor. I lost function in my left leg due to the removal of my nerve - but the tumor is gone, there was no metastasis - and I get scanned every 3 months (for the first 2 years) now I'm up to every 4 months. Still all clear. Please feel free to contact me directly if you want details about my treatment, doctors etc... This is such a rare thing - I've yet to actually connect with anyone else who's experienced an MPNST in their sciatic nerve.
Be well.0 -
MPNST
Hi, my mum has been diagnosed with a 6cm tumour encased on her sciatic nerve. This is secondary to bladder cancer she had approximately 3 years ago. Whilst we have not been told the actual name for this type of tumour/cancer I can only assume from what I am reading on here that it might be MPNST. At present she has had 33 sessions of radiotherapy only to be told that this has had no effect on the tumour. We were told by our consultant that surgery was not an option because of where the tumour is and are waiting to find out if/what they plan next. I have been trying to find out on the internet whether surgery is actually possible and from what little i have read it seems it may well be a possible option. I may actually be barking up the wrong tree in my own diagnosis of what this type of tumour/cancer is called (the consultant does not want to tell us other than it is secondary cancer!) but i would really would appreciate any information, stories, anything really that anyone can share with me about this awful disease. My thoughts are with everyone that may be having to deal with what we are going through.0 -
Son age 26 diagnosed with MPNST in April 2013
My son was diagnosed with a MPNST in his abdomen. He was treated with the same chemotherapy that your husband experienced. My son almost died from the treatment. He had a 23 CM tumor removed from his abdomen but they called it debulking because they could not get it all. He is in a similar situation as your husband because a recent scan shows tumors growing in the peritoneal lining of his abdominal cavity. His oncologist mentioned chemotherapy but it sounded like what your doctor suggested. I am getting a very bad feeling about it. If you do find out anything that would be helpful, please keep me in the loop.
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abdominal cavity mpnstLForbes1025 said:Son age 26 diagnosed with MPNST in April 2013
My son was diagnosed with a MPNST in his abdomen. He was treated with the same chemotherapy that your husband experienced. My son almost died from the treatment. He had a 23 CM tumor removed from his abdomen but they called it debulking because they could not get it all. He is in a similar situation as your husband because a recent scan shows tumors growing in the peritoneal lining of his abdominal cavity. His oncologist mentioned chemotherapy but it sounded like what your doctor suggested. I am getting a very bad feeling about it. If you do find out anything that would be helpful, please keep me in the loop.
Hello, My husband has abdominal cavity mpnst for 1 year. He has gone through the following:
First, radiation treament 5 days a week for 5 weeks =it worked on about 70% of his tumor.
Next he had surgery that removed his tumor. We thought is was sucessful but we went for a check up scan and the cancer had metastasized to lungs.
Next he went thru 5 rounds of ifosfamide is given together with mesna. It was working he was suppose to have 6 but it was damaging his kidney. ( which are barely functioning right now)
Now he is on Votrient. He is tired and a little nauseated. But able to put up with it. I have learned in this process you have to be fighting the Sarcoma all the time. During my husbands ordeal when ever he took a break (before surgery, after surgery, after chemo....it grew and came back quick. I still have hope, Votrient sounds promising. Clinical trails are ongoing and they may find a better treatment soon.
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I have been off this site forMattm0311 said:Sciatic pain
My wife just had a MPNST removed from her lower leg. We do not know yet if it has metasticised. Did you husband feel pain in his sciatic?
I have been off this site for quite some time. Yes he most definitely had pain. All the doctors had a million different reasons for the pain and pushed pain meds but none took a really close look for almost a year. When we finally got to a great doctor is took him two appointments to refer us to an Oncologist and that was the beginning. Still fighting 5 years later after much surgery, amputation, radiation, and chemo. Next step is Votrient. I am sorry I am so late in my reply. My thoughts are with you and your wife and pray that you both are hanging in there.
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Abdominal cavity mpnst replylisah55 said:abdominal cavity mpnst
Hello, My husband has abdominal cavity mpnst for 1 year. He has gone through the following:
First, radiation treament 5 days a week for 5 weeks =it worked on about 70% of his tumor.
Next he had surgery that removed his tumor. We thought is was sucessful but we went for a check up scan and the cancer had metastasized to lungs.
Next he went thru 5 rounds of ifosfamide is given together with mesna. It was working he was suppose to have 6 but it was damaging his kidney. ( which are barely functioning right now)
Now he is on Votrient. He is tired and a little nauseated. But able to put up with it. I have learned in this process you have to be fighting the Sarcoma all the time. During my husbands ordeal when ever he took a break (before surgery, after surgery, after chemo....it grew and came back quick. I still have hope, Votrient sounds promising. Clinical trails are ongoing and they may find a better treatment soon.
Can you please share with me your husband's experience on Votrient. My husband will be starting later this month. It is pretty much the last line. He has been through everything else and although worn down he still wants to fight as hard as he can. He is 47 and still wants to get as much out of his life as he can.
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Mpnst
Hi I was wondering how is your husband doing?I was just diagnose in March with a tumor on my sciatic nerve MPNST. They want to remove my whole nerve. So this means always function from my knee down to my foot. I just want to know if there's any other way that they can do this ? I've heard of other people who have something called drop foot. I was told by the doctors at the Mayo clinic and the U of M that the Sladich removal was the best option for getting rid of the cancer. I really want a third opinion. My job requires me to be on my feet all day long. Did this happen to your husband ? can he move his legs or foot? I hope all is okay with him. Prayers and hugs for you going through this Awful cancer!
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MPNST Metastasized
My 9 yr old niece was diagnosed with MPNST at the age of 7. She is NF1 Negative. The tumor was on her right forearm. The did surgery, aggressive chemo, and radiation for a yr. She responsded well, actually the tumor responded by shrinking, she on the other hand has exstensive heart damage from the chemo that was administered. She was to go back for scans and work ups every three months. she returned this month on the 27. On th 28th we learned her cancer has returned and metastasized to her lung. We don't have the full details yet, wont know til wend. after the cancer board meets and stratigizes her case. But she cannot receive any more chemo bc the previous heart damge that occured. they tossed around radiation, clinical trials, and alternative treatments when they told us the cancer was back, but nothing is definite. I'm terrified. The statistics, to say the very least, are bleak and utterly frightening. Does anyone know of any promising clinical trials for metastasized MPNST's? I would really like to hear from anyone who has successfully used natural cures for a previously diagnosed MPNST. I've been doing research but there is just so much out there and I'm having trouble distinguishing the real stuff from the frauds. Any help would be greatly appreciated. Julia is only 9 yrs old. This just isn't fair. She deserves a childhood. A life.
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MPNST
I just recently found out yesterday that my mother was diagnosed with MPNST. It's all still very new and I'm still in shock and kind of feel numb to the situation. As of right now, I don't know the size of the tumor. However, I do know that it is fairly large. If I had to guess, it's about 17cm in size. It is on her upper inner part of her thigh. If anyone could please just share any stories on what to expect, that will be greatly appreciated. Prayers and blessing to all.
~ThereIsHope15
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MPNST Survivor Since 2008
I was originally diagnosed in 2008 with a tumor in my right knee and femur. I had chemo and radiation which my tumor refused to respond to, and I ended up with an amputation. I just got done in May 2008 with treatment for mets in my right lung and a bit in my left too, which had gone through my lung and pleura and had attached to my diaphragm. They did a wedge resection of my left lung and removed the bottom and middle lobes of my right lung. No chemo or radiation due to the fact that I didn't respond anyway last time. First set of clean scans just happened this week. I did go several years cancer-free, hopefully I can do so again.
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MPNST
in October 2015 I was diagnosed with having an MPNST from my thoracic spine to my sacrum. I was only 22 at the time, my syptoms were nerve pain in back and legs. I had been told it was a potentially aggressive tumor so I underwent extensive surgery to have it removed in January 2016. Despite the Dr's expecting the tumor to be aggressive they later found out it was a low grade MPNST. I have been cancer free since, I get an MRI every 6 months but after August it will be yearly. I did not receive radiotherapy or chemotherapy and I am extremely worried about reoccurrence. I live with pain every day - nerve pain down my right leg. I don't know if it's psychological or not due to the fear and anxiety I have with it. I am an A&E Nurse so I know I should go to the doctor about the pain etc. It would be good to speak to someone who has also had an MPNST as it's so rare!
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Help, my name is britney and
Help, my name is britney and I was just diagnosed with cancer. Spindel cell tumor sarcoma stage 2. Plus I have Neurofibromotis 1 I had surgery on the 27 of April and had it removed . That's when the doctors told me it was peripheral neeve sheath tumor with extensive necrosis size was 3x 1.4 cm. I'm really down I'm 30 years old with 2 beautiful children. I will be having to go through radation an chemo but I've researched and seen outcome and it's not looking good has anyone went through this?
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Nerve sheath tumor of peroneal nerve
i was recently told I have a 2x2 cm tumor found on MRI of my knee looking for an ACL injury. I don't know where to begin, what type of doct to see as the nurse from work read this off the report and sent me on my way. Any advice would be appreciate. I have had pain, numbness, bad crampin, and significant temperature difference in my leg for years but it was always blamed on my Hashimoto's Thyroiditis.
thank you
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TumorMandaclari said:MPNST Survivor Since 2008
I was originally diagnosed in 2008 with a tumor in my right knee and femur. I had chemo and radiation which my tumor refused to respond to, and I ended up with an amputation. I just got done in May 2008 with treatment for mets in my right lung and a bit in my left too, which had gone through my lung and pleura and had attached to my diaphragm. They did a wedge resection of my left lung and removed the bottom and middle lobes of my right lung. No chemo or radiation due to the fact that I didn't respond anyway last time. First set of clean scans just happened this week. I did go several years cancer-free, hopefully I can do so again.
hi, I was just told I have a tumor in the nerve sheath of my peroNeal nerve after having an MRI for something else in my knee. this was for work so the nurse at work told me about the tumor and said, " go see your doc " I don't even know what this will all entail. Could you shed some light on the subject for me pleas. Thank you.
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Genetic Testing
Hi all, I have recently completed treatment for a MPNST in my neck (surgery & radiatio). So far, scans are clean (Praise God!) and now my docs are encouraging me to be tested for NF1. I am very hesitent to be genetically tested, as it doesn't affect my overall treatment, and there is no real cure for NF1 anyway. I also worry about discrimination from insurers (there are no protections for long term care, disability, or life insurance). Does anyone have any advice? Are there real benefits to being genetically tested? Thank you! Praying for you all!
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MPNST with NF1
My wife has NF1 - 2 years ago an NF in her left leg was found to be a sarcoma and she had her left leg amputated above the knee. The cancer metastasized to her lungs, she had more surgery to remove the nodes and we almost lost her because of complications. A few months later the nodes in the lungs were back. The docs finally tried chemo, we're having luck with a combination of Gemcitabine and Docetaxel, as in the tumors have not grown. We just had another scan today with no new cancer growth. I was wondering if anyone else had luck with chemo treatments for MPNST with NF1.
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Pelvic MPNST
i was diagnosed with MPNSt in my pelvic bone in July of 2017.I had 3 rounds of chemo and it seemed to have some effect. they say my tumor started in my pelvic crest and spread to the soft tissue around it. On November 15, 2017 the tumor was removed with good margins. I had a Pet Scan recently and a CT of my brain. The found a cyst on the front lobe of my brain and a couple of other small spots. They are going to remove the front cyst on a Thursday and treat the small spots with the gamma knife. I’m being treated at the Sarcoma unit of Sylvester cancer center at the University of Miami. They are assuming it’s connected to my MPNST but they won know till it’s Analyesed. i understand this is unusual for it to got to the brain. Has anyone experienced anything similar?
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