MPNST

Hi, my 3 year old daughter has been diagnosed with mpnst.  We have had two surgeries and the tumour is now removed.  Scans are clean so far, hence our oncologist has decided to not proceed with chemo.  I would like to get in touch with people who have had their tumour fully removed to see how they got on.  These last few months have been very scary and I have not found a lot of data on mpnst.  We were lucky in the fact that it was on her foot, so we got the tumour before it got bigger.  Please let me know if you were/are in a similar situation.  She is classified as being in Group 1 or Group A.

 Thanks

Janneke

Hi, hope all is well with your daughter.  My son was 13 years old when he was diagnosed with MPNST in October 2007.  Peter had 5 cycles of Doxorubicin and Ifosfamide along with 25 rounds of radiation.  Then he had his first surgery February 2008 they had to remove the lower lobe of his right lung, 2nd right rib and his right chest wall.  His chest wall was reconstructed with his pectoral muscle.  He then had 2 more cycles of chemo.  His protocol was 7 cycles of chemo, 25 rounds of radiation and surgery.  He had 2 new tumors that grew while he was receiving his last 2 chemo cycles.  He had to have another surgery May 2008 to remove those tumors and an additional 15 rounds of radiation in August 2008.  His Oncologist had told us in the beginning that this cancer is not chemo sensitive.  Since the chemo did not work and he was not allowed more then 7 cycles of this chemo treatment.  The Oncologist had put Peter on Gleevec 400mg a day in July 2008. He takes Zofran to prevent nausea from the medication.  Gleevec is not a treatment for MPNST.  Peter's Oncologist felt that we need to try this since the chemo/radiation was not enough.  So far his scans show no progression of the disease. Peter is not out of the woods.  His right lung is maxed out for radiation treatment.  He is maintaining his weight.  His next scan is scheduled for July 24, 2009.  Since this is rare cancer it is hard to find info on it. Sorry for the over load of information.  This the summarized version.  God Bless and take care.  Susan

hi!!!  i have mpnst !!!  i have nf  also and it came from that, it was growing on my right thigh. 18.0 x 16.8  it was removed on march 26 2007 i also had 7 weeks of radation which turned in to 8  evey day but sat and sun, then in middle june had a double port put in to the right chest( 4 chemo ) which is still there,, dr says he dont want to jinks ourselfs so he wants to leave it. i then did ifosfamide..doxorubicin and mensa.. 5 days in the hospital every 21 days the 1st was soooo bad he had to stop i was VERY sick got phmoma    went from 121 to 112 in 4 days ( i am only 5 foot with by boots on  lol  ) can't express how sick  i was   dr did't think i could finish treatment. lower dose 21 days later... better this time but still sick. 3 one.....   then 4th i had to stop..... i felt like i was loosing my mind ... tryed praying with the nurse.. pastor... they got me OUTSIDE  FOOD.. lol .. tryed walking only allowed to end of hall...fresh air please.... dr said think about it but if you decied not to know if it comes back its not cause you stoped them, it is a agressive cancer.. i did't finish....this was sep 2007   in april i had a tumor taken off the adrenal gland we knew it was there but had to finish chemo first... i have been to my check ups and going again  in aug ... all has been good so far but  have been kink of tired and will go  to part time at work this next week have a great boss of 10 years besides i have to pay the house payment.. not a lot about it would like to meet others and share info with

bless you

connie

On 3/21/2009 Janneke wrote:

Hi, my 3 year old daughter has been diagnosed with mpnst.  We have had two surgeries and the tumour is now removed.  Scans are clean so far, hence our oncologist has decided to not proceed with chemo.  I would like to get in touch with people who have had their tumour fully removed to see how they got on.  These last few months have been very scary and I have not found a lot of data on mpnst.  We were lucky in the fact that it was on her foot, so we got the tumour before it got bigger.  Please let me know if you were/are in a similar situation.  She is classified as being in Group 1 or Group A.

 Thanks

Janneke

Hi Janneke, My son was diagnosed with MPNST in his right thigh, and he had 2 surgeries to remove the tumor and 2 of his quad muscles. The margins all came back clear, and he is now doing really well. He never had radiation or chemo either. His last surgery was 12 months ago, and all his scans since have been clear. I hope you get the same good results as we did. It is a very scary time, and it is very hard to find information about MPNST. Good luck with everything.