Cancer Survivors Network

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 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

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.

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'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 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

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

I was treated with 4 cycles of Adriamycin and Ifex then 4 more cycles of Ifex and VP16 followed by 30 radiation treatments

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?