Malignant Peripheral Nerve Sheath Tumor

My 52 year old husband has had a recurrence of his sarcoma and it has now spread to his lungs and liver. He has more than 30 mets to the lungs alone and is on 75mg of tarceva. We don't know yet if it's going to work but he is getting extremely weak and the change in the past week has been dramatic. Does anyone out there know of any other treatments or clinical trials? He only has one kidney and that presents a problem with many drugs. His doctor has advised that we contact hospice. We are desperately seeking any help anywhere in the world (legitimate medical). Thank you.

My husband, Phil, had a soft tissue sarcoma in his left tricep that was graded at Stage 1A. After 25 treatments of radiation at Princess Margaret Hospital in Toronto to shrink it, the tumour was surgically removed in March/05. He was given a very positive prognosis - 97% chance of CURE. In July however he found a large tumour in his left armpit. A CT-scan and surgical biopsy confirmed it was an aggressive cancer and also confirmed several small spots on both lungs. We were devastated but Phil is determined to beat this. As we understand it, the new cancers are spindle cell peripheral nerve sheath types but the pathologist was not able to determine the exact kind. We were told that spindle cell cancers tend not to respond well to chemo (20-40% chance of chemo being effective). Phil has just completed his 3rd round of chemo (treatment protocol = 3 days continuous IV drip of doxirubicin and ifosfamide, then two weeks off; then 3 days of chemo, 2 weeks off, etc.). A CT-scan done after the 2nd round of chemo revealed minimal change in the size of the tumours - but thankfully, they were no larger. The chemo seemed to have slowed down the growth. We were relieved that the growing had stopped but our oncologist was disappointed that there hadn't been a decrease in the size. He noted that there might be some evidence of necrosis (dying of cells in the centre of the armpit tumour). I would say that our initial excitement has worn off and now we're worried again. We asked the oncologist if he would try tarceva if the combo of doxirubicin and ifosfamide doesn't work; however he said that tarceva is only used if lung cancer is the primary site rather than the result of metastases. Does anyone have experience with tarceva or any other drug working on sarcoma mets in the lungs?

My husband is currently taking tarceva to try and slow the progression of mets to his lungs and liver. He's been on it for 38 days but so far, we haven't seen any responsiveness from the drug. There are several clinical trials going on with tarceva and sarcoma. City of Hope under Dr. Warren Chow, is doing one right now. It's a phase II study. There are several other names that this drug is known--elotinib, OSI-774 and I believe iressa is also the same thing. The drug can be given outside the trial as my husband is doing because he did not meet the clinical protocol. It's a vicious disease and it seemed to grow right through his chemo of ifosamide/mesna, adrymycin/cistplatin and 6 weeks of radiation. His original tumor was removed and at that time (and part of it certainly responded because it was also partially necrotic), there was no spread but less than a year after surgery, it came marching back. I wish you and your husband much luck in fighting this.

Dear "Whatavoice", Thank you for your informative response. I am so sorry about the recurrence that you and your husband are coping with. My prayers will be with you. This is bloody awful disease. Would you mind letting us know how your husband fares on Tarceva? My husband has had a limited response to chemo thus far (only 2 rounds), so we are interested in options we may later need to pursue. We have also commenced treatment with a naturopath - daily injections of extract of European mistletoe, called Helixor; and twice weekly IV injections of high doses of Vitamin C. Both are reputed to boost the immune system (restore white blood cells), reduce the negative side effects of chemo, and attack cancer cells. While on first glance it sounds farfetched, there is impressive outcome data associated with both. Best to you, Joan M.

My daughter Lindsay, at the age of 8 was diagnosed with an Orbital MPNST. She went through Radation treatment in 2004. In Feb. this year (2006) The tumor returned. At age 10 our beautiful little girl has has her right eye removed and is under going Chemo. 6 rounds of of Ifosamide and 5 rounds of Doxorubicin. Iv drip three days in the hospital and 18 days home. MRI has shown no signs of reoccurence and Ct scan has shown no increase or movement of a nodule founf in her lung found at initial diagnosis. We have just finished round 4 of her treatments. I am looking for any information I can find on this terrible disease and entional support as well.

 

On 8/5/2006 Beetlbug wrote:

My daughter Lindsay, at the age of 8 was diagnosed with an Orbital MPNST. She went through Radation treatment in 2004. In Feb. this year (2006) The tumor returned. At age 10 our beautiful little girl has has her right eye removed and is under going Chemo. 6 rounds of of Ifosamide and 5 rounds of Doxorubicin. Iv drip three days in the hospital and 18 days home. MRI has shown no signs of reoccurence and Ct scan has shown no increase or movement of a nodule founf in her lung found at initial diagnosis. We have just finished round 4 of her treatments. I am looking for any information I can find on this terrible disease and entional support as well.

I would love to hear about Lindsay's progress and treatment.  I would love to find out where you are receiveing treatment as well. I am also the mom of a beautiful 15 year old daughter who has recently been diagnosed with a MPNST.  She had a large tumor removed in February 2007 from her right axillary/shoulder area. Her doctors believe that what we were told was just a small calcified cyst when she was 10 (the size of her thumb nail) was actually the start of her tumor.  When her tumor was removed it was the size of a large grapefruit and had grown at a rapid pace within weeks. At this point, no radiation or chemo has been recommended. Thank you!

 

My wife is in a similar situation.  She is 31 years old and was diagnosed last November after doctors removed her left kidney where the tumor was found.  She underwent Ifofsamide/Adriamiacin treatments which ultimately all but destroyed her remaining kidney and she is now on dialysis.

We found out in July that the cancer may have spread to her lungs.  She has since progressed at an alarming rate and there are large metastatic tumors in her abdomen, both lungs, and a new nodule on her liver.  They initiated Gemzar/Taxotere initially but her body could not handle it.  We went to a second opinion at the University of Michigan where we were told radiation in an attempt to quiet some of her symptoms (pain, breathing problems, and coughing up blood) was our only option.  We have been told it is terminal.

We were told initially that this was fibrosarcoma.  Another university hospital's pathology called it synovial sarcoma, which she was treated for.  Finally, U of MI diagnosed it as malignant peripheral nerve sheath tumor...we have been confused and lost as well.

I mention all of this because our stories seem similar and to offer the idea of Gemzar/Taxotere since this was initially used on my wife because of her kidney issues.  This chemo combination apparently benefits about 35% of patients generally, however, not enough research was out there for synovial.  Maybe there is for MPNST?

Good luck in your situation.  If you would like to email me to talk more about this please do...

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Hello! My 14 y/o son Sam had a 9x12 cm mass removed from his abdomen 10/29/07. The tumor was diagnosed as an MPNST 11/2/07. The tumor grew back after 3 weeks of removal. The tumor originated from his spine, so they could not get a wide-enough margin. He has been on I.V. chemo isofomide/doxirubicin and has been on Etoposide and Cyclophosphomide at home. He also received 10 rounds of radiation ending 12/24/07. He is currently on Siromulus and may be starting on Gleevec. Sam's diagnosis spread to his lungs (he has had a total of 5 lung nodules removed), he has had 10 ounces drained from his left lung. The tumor had pushed his right kidney up stretching his ureter. He has had several ureter stents placed, replaced and finally removed due to bladder spasms. Most recently he had to have a nephroscopy tube placed in his kidney as it was not draining. He missed almost his entire 8 grade. He has yet to start high school, hopefully he will start this week. I have met three families who have lost children to this diagnosis, all within a 12-14 month from diagnosis. Doctors do not give this diagnosis much hope. I and my son are believing in THE GREAT HEALER, Jesus. That is what is getting us through. Does anyone else have any other information they can share with me, whether good or bad.

Thank You & God Bless

Noelle

I've heard of Helixor...Suzanne Sommers does this instead of chemo. Also Matake mushrooms is noted. And food grade peroxide (but I hear causes stomach troubles/holes).  I have an inconclusive biopsy but tumor in brain and nerve sheath (spine).

Also I am wondering where you go for treatments (everyone), natural cures etc. I understand leaving my email here will get removed but I will check the box so if any one replies I can read it. I wish I could leave an email address.

God be with you all in your sufferings and healings.

Keep looking for opinions, cures, care, treatments, etc wherever you can.