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Soft Tissue Sarcoma

ilbeatit
Posts: 3
Joined: Dec 2000

Hi, I'm a 39 year old male that has been recently diagnosed with a Mailgnant Peripheral Nerve Sheath Tumor. It is a form of Soft Tissue Sarcoma. The tumor was removed a few months ago, and now I am in Radiation treatment. I
Thankfully, it appears although the tumor was high-grade aggressive, it has not spread. After numerous consultations with several oncologists, I have decided to undergo Chemotherapy treatment beginning in January.
I am wondering if anyone has had or heard of someone with a similar gorm of cancer. I'm told that less than one percent of all cancers diagnosed each year are this type. Any help is much appreciated!

rjb1437
Posts: 5
Joined: Dec 2000

I was diagnosed with a Synovial Sarcoma equally as rare. I just turned 40. I met with a radiation oncologist today, had tumor taked out 3 weeks ago. I did 4 rounds of chemo, Ifosfimide, dioxirubin. First two rounds weren't too bad last two nailed me. I lost twenty pounds and ended up in the hospital for three days after round four. The chemo is nasty but you can get through it, it is essential to kill any cells that mey have got away. I am looking for a complete recovery from this, stay positive and get good info. Dana Farber is Boston specializes in sarcomas they have been great. Also check out www.sarcoma.net. Dr. George Demetri runs the sight and is considered the best in sarcoma oncology.

Good Luck

CONNIEUSA
Posts: 1
Joined: Apr 2003

I AM 48 YEAR OLD MOTHER,,OF 3 BOYS,,,,I HAVE BEEN DIAGNOSED WITH MYXOINFLAMMATORY SARCOMA,,,,IT AFFECTS THE EXTREMENTIES,,,I HAVE IT ON MY LEFT THUMB,,,,DRS AT THE UNIVERSTIY OF MICHIGAN,,SAYS ITS SOOO RARE,,,,ONLY 44 DOCUMENTED CASES IN THE WORLD SINCE 1949,,,,,,,,,,,,WHEW,,,,AND I AM NUMBER 45,,,THEY NEVER SAW THIS BEFORE AND SAID THEY PROBABLY NEVER WOULD AGAIN,,,,CHANCE OF ME WINNING THE LOTTERY IS MUCH BETTER,,,SO THE DRS AND ME HAVE DECIDED TO GO AHEAD AND AMPUTATE MY THUMB,,,,SO REOCCUANCE DON'T HAPPEN,,,,I HAD SURGURY ON IT A MONTH AGO,TO TAKE OUT THE TUMOR,,,BUT IT IS GROWING BACK,,IF THEY LEAVE JUST ONE CELL THERE,,,,,IT GROWS BACK,,,,,,,,,,,,,,,SOOOOOOO PLEASE GIVE ME SUPPORT,,,,,,,,,,,,,,,,,AND PRAYERS,,,,
EMAIL,,IS CONNER007@AOL.COM

ncaines
Posts: 3
Joined: Apr 2011

My name is Natasha and my husband was diagnosed with Synovial Sarcoma in his hand in the soft tissue between the thumb and index finger. Interesting to share stories.

cwessels
Posts: 2
Joined: Jan 2001

A very dear friend of mine also had a malignant nerve sheath tumor. She also has neurofibromatosis. The cancer has now metastisized to her lung and spine. She will begin her first round of chemotherapy Monday. How are you? I know my friend is wanting to correspond with someone who may be experiencing similar issues. I wish there was something I could do.

ilbeatit
Posts: 3
Joined: Dec 2000

Hi, Thanks for the note. I'm sorry to hear about your friend. I know she can beat it!! My particular tumor was not Neuro like your friends', however it is the same form of sarcoma.
Coincidentally, I to am beginning chemotherapy Monday, actually, in a few hours. I just completed radiaition, and it looks like I am more fortunate than your friend, as it appears to have not spread.
Please wish your friend good luck. Also, tell her to feel free to reply to me. I'll be in the hospital until Friday, but I should be be able to visit this site after.
Thanks

cwessels
Posts: 2
Joined: Jan 2001

I hope you are feeling well following your chemo today. I'll keep you in my prayers. I've encouraged my friend to register with this site so hopefully she can benefit from your shared experiences. Having someone to talk to who understands what you may be going through can sometimes make a huge difference.

Please let me know how you are.

Cheryl

carollh
Posts: 3
Joined: Apr 2004

Hi cwessels, I just read your message & wanted to talk. My daughter is 27yo & was diagnosed with mnst 9/03. Had Ifosfamide & Adriamycin chemo which didn't help her tumor. Radiation helped more. Surg. to remove it was next after radiation. Tumor was encapsulated, but it has already spread to her lungs. Now she is getting Gemzar & Taxotere chemo. for her lung tumors. It is so difficult seeing her go thru this. Difficult to have a positive attitude as well. I just pray we are doing the right thing. We have to trust her oncologist. I am fearful of her next chest xray in 4 wks. I will be devastated if there hasn't been any improvement. Help. Carol

jcthomas
Posts: 15
Joined: Jan 2001

Hi. I was diagnosed with a soft tissue sarcoma in the hamstring muscle of my right leg in 1995
(I was 28). The tumor was a high grade tumor but the cancer had not spread. I live in Maryland so
I got opinions at Johns Hopkins and Univ. MD Medical Center. Went with the U. of MD
treatment regime because they had a "team" of doctors with a treatment plan. The treatment
plan consisted of high dose chemo/stem cell transplant, surgery, internal local radiation,
external radiation, and three follow-up courses of chemo. The treatment was long and drawn
out, and there were complications, but I feel it was worth it. Can you tell me a little more about
your tumor/cancer? How did you find out you had the tumor? I hope you find yourself well
during your chemotherapy treatment. If you need anyone to talk to or vent to while going
through the chemo I am all ears. Good luck. John

rjb1437
Posts: 5
Joined: Dec 2000

John,
What do we sarcoma people worry about after things are over. I find mysef paranoid with ervery ache and pain. I am three weeks into my radiation feel great but am in constant worry. Any thoughts with how you coped through your situation.

ilbeatit
Posts: 3
Joined: Dec 2000

Hi, this is in reply to all those that that took time to inform, discuss, etc., my original message.
Thanks, the info has been helpful. I just finished my first six day hospital stay for Chemo, and survived the vomitting, nausea
etc. I have three cycles left, all requiring the 6 day stay. Like my web page says, take every day as your last, and appreciated thoses around you
that care so much. Talk to you soon!

rjb1437
Posts: 5
Joined: Dec 2000

Keep going... It only gets better.. I'm into my third week of radiation and I'm starting to "tan" or should I say "burn" Just went to a meeting to participate in the "Relay for Life" organized in my town for the last five years.. this year it seems a little more important to me. I'll be there taking my lap as a survivor..God willing.. and raising money to cure this foolishness.

saramac
Posts: 2
Joined: Feb 2001

i have a similiar sized scar on my hand after my sarcoma was removed, i too have small lumps. Apparently these are not dangerous but we are bound to be wary of everything especially due to the high percentage of re occurence in these cases. Good luck with any remaining treatment

ncaines
Posts: 3
Joined: Apr 2011

Hi my name is Natasha and my husband had a tumor removed from his hand. Would be interested in knowing more and treatments given. Thanks

bigt
Posts: 3
Joined: Aug 2003

bwolf was just dx with 13 in loww grade tuma wil be getting surgery and rad . i also like to run and workout but was told not too what did they tell you .any damage what was your recovery like

bigt
Posts: 3
Joined: Aug 2003

bwolf was just dx with 13 in loww grade tuma wil be getting surgery and rad . i also like to run and workout but was told not too what did they tell you .any damage what was your recovery like

jcthomas
Posts: 15
Joined: Jan 2001

This may sound strange but I found that after my treatment ended I was more worried than I had
been during the treatment. I think it had to do with severing the ties with the people treating me.
The worry never ends. It can be controlled and may diminish in time but the thoughts of the past
never disappear. Fighting cancer is not like barely avoiding a possibly fatal car crash which
occurs in a split second. Fighting cancer takes time and getting on with life afterwards takes
time. I worry about every lump I find. I have even had a lypoma removed from the same leg a
year ago though my doctor said it was not necessary. Stay positive, believe in life, and carry
on. It is human nature to try and survive. I found that enjoying the smaller things in life has
helped me greatly I always feel there are not enough hours in the day to think or talk about this
subject. I hope anyone reading this who is fighting cancer may one day find themself well.

DEBO64
Posts: 1
Joined: Mar 2003

Hi I am a 38 year old female, diagnosed with the
same as you, a malignant Nerve sheath tumor, Mine
was in the lung so I had to have the bottom lobe
of my left lung removed.I was told that since this was a rare type of cancer, that it did not respond to aggressive treatment. So as of now I am
not undergoing any treatment. I was wondering if you were told the same thing, and if it took several differant consultations before you found a Dr. who was willing to help you fight this?
I am sorry for your diagnoses.

Chriztina
Posts: 2
Joined: Mar 2003

Debo64-want to hear something funny? (well not really funny, but you know what I mean) I am 27yrs old had surgery 3/3/03 to remove a neurofibroma (measured 6.5x5.5x4.0cm)from paraspinal region (T-10), T-11) margins cancer free-inside yucky cancer-diagnosed: malignant peripheral nerve sheath tumor, high grade. A week to the day later my grandmother goes in for "exploratory" surgery for her lung. It is cancer- they remove the lower lobe of her right lung. She was diagnosed with Adenocarcima. Good news is she does not have to do chemo or radiation. Bad news-I do!!yahoo!! Really interested in what your Dr's told you as to why didn't have to go thru all the crap? I have looked everywhere for cases like mine!! Do you know of any websites or others that I could email also? Let me know how you are doing. You can email me = Sightgiver@aol.com
Thanks!!! :-) Christina

CourtsSis
Posts: 1
Joined: Mar 2004

Hi!
I hope this finds you succeeding in your battle with this awful cancer. My sister has neurofibromatosis and one of her tumors turned cancerous, she was diagnosed in August and has been fighting ever since. She is receiving treatment at MD Anderson Cancer Center. I would recommend this cutting edge hospital to anyone who is diagnosed with sarcoma their success rates are high. My sis just underwent an 18 hour surgery to remove the mass on her right chest wall, and all looked well, all CT scans and PET scans were clear prior to surgery and while undergoing radiation and chemo treatment. We pray that was it!! She is 27 years old and has dealt with so much. Having NF has never dominated her but but that was enough, and then the diagnosis of sarcoma. I try to have faith in God and so does my family. We pray for all who suffer and are fighting any form of cancer. Here is a link to her website, please check it out! PLEASE PRAY
http://home.comcast.net/~prayersforcourtney/wsb/html/view.cgi-home.html-.html

Chriztina
Posts: 2
Joined: Mar 2003

I am 27 yrs old, recently had a neurofibroma removed from paraspinal area(T-10, T-11) it is sarcoma-a very rare sarcoma.Malignant Nerve Sheath Tumor, High Grade is what the pathology report says. I have been looking everywhere for anyone who has a case like mine!!! I start chemo in 2 weeks & then radiation! Please let me know if there is any info you may have!!! My Dr. has mentioned MAID to me regarding the chemo--what is it? He is also consulting with MD Anderson Cancer Center. Is there anyone who knows anything about this stupid rare cancer?

mkrees
Posts: 2
Joined: Mar 2004

okay this is a year late, so I hope and pray that you are doing well. I was diagnoised with Malignant Perphial Nerve Sheath Tumor back in 1992, when I was 18. Mine was in my right chest. I had 3 surgeries, the last one being in 1998. I have had the two upper lobes on my right lung and four ribs removed and way back in 1992-1993 went through chemotherapy. I went to MD Anderson Cancer Center for the majority of my treatment and my oncologist at the time hadn't seen this type of soft tissue sarcoma before. My last surgery was here in Oregon though and went well. My doctors debated at the time whether or not I should have radiation as this was my second recurrance and decided that it wouldn't do any good. The surgeon got it all though and I feel very lucky about that.

BigSis2Court
Posts: 1
Joined: Mar 2004

hi mkrees!
Your situation sounds so similiar to my 27 yr old sisters. Her sarcoma is mpnst as well. She is now at MD Anderson fighting for all she is worth, down to 75 lbs. She had an 18 hour surgery to remove a sarcoma mass from her right chest wall that the thoracic surgeon said was encapsulated, all the scans showed that as well, however once he got in he did find 4 nodules on her lung and removed them. The margins from her mass in her chest wall were tested, and were clear of cancer cells. She was going to have to have several ribs, part of her diaphram, and possibly a few vertebrae removed, but they ended up not having to do that. She did end up with a spinal fluid leak because the fibroma was attached to her derma surrounding her spinal column. It collapsed during surgery so they patched it, but a week later she was dizzy nauseated and leaking from her bandages clear spinal fluid. They thought they would have to go back in and fix it but with much prayer and only a 1 in 10 chance of it healing on its "own" it healed! I pray that this is all there is. She has NF too, and sarcoma tends to be more aggressive with people who have neurofibromatosis. Just wanted to talk to you because its reassuring to talk with people who are surving this cancer it gives me hope for my only sister Courtney. I would love to correspond with you, please let me know how you feel about
that. I am in the chat room often, my user name is bigsis2court. keep fighting!
kim sadler

mkrees
Posts: 2
Joined: Mar 2004

Hi Kim,

I'll pray for your sister. She can make it, I know that. Her situation does sound similar to mine. They told me before my first surgery that they would remove my entire lung, but they didn't. I still have one lobe left. I was surprised that they removed some ribs, part of my diaprhram and part of my heart sac. The tumor had pushed my heart to the left side of my chest and I was VERY lucky that it didn't enter my heart or I probably wouldn't have survived long. I'm 30 now, so it's been 12 years since I was diagnoised and my chances were apparently not good, but here I am. I married (got the second recurrance for a first anniversary present) and since my last surgery have had two little boys.

I don't have NF, but I think my mom might. She is covered in cafe au lait spots. I only have one cafe au lait spot and it is directly over where my tumor was.

I would love to correspond with you, but it's been years since I've had any treatment so I am not up to date on things.

Mary Katherine Rees

p.s. are you in Houston with her? My mom and two of my brothers still live there.

carollh
Posts: 3
Joined: Apr 2004

I'm new to this site. My daughter was diag.with soft tissue sarcoma 9/03. She had 2 rounds of chemo and 6 wks of radiation. Then surg. Recently after a ct scan, we were told there are a few nodules in each lung. They are planning to do more chemo with gemzar. Anyone have anything positive to tell me about all this. It is so devastating. Thanks Carollh

PinkyMink
Posts: 1
Joined: Jul 2005

Hey guys. My name is Jillie and I too was diagnosed with MPNST when I was just 17. The cancer Center near my home told be to go home and enjoy my last year as much as I could.
My parents, alwaysy my dedicated didnt rest until they found the one surgeon in the world that would attempt to resect the tunor, which was thought to start at the base of my brain, wrap its way into my ear canal, wrap iself around my facial nerves, carotid artery, jugular, and all that other good stuff. I was givevn less than a %5 chance of coming out of the 18 hour surgery. If I was to survive I would most likely be a human vegetable because the part of the brain that controls conciousness, breathing, heart beat were all involved.
During the surgery it was found that my tumor continued down into my chest.
To make a long story short, I have just about every Cancer Institution in the US studying my case because I had the largest MPNST in medical history to their knowledge.
I had to learn how to eat, talk, walk, and take care of myself all over again. When I was just starting to recover I am whisked away to a cancer research hospital to try some experimental treatment. I was patient #1 in their protocol study, and to the best of my knowlege I am the only patient of the study that survived the high dose chemo, and 66 grade radiation.
I have had every complication you can think of, from Menagitis to a fungus that gew in my blood stream and stop my temperature up 5 degrees in 15 minutes. That was fun.
Long story short, I take a licking but I keep on ticking, and from what I have read it seems like you all are strong too.
I would be honored to hear from any of you. Perhaps we could share "old battle stories and compare battle wounds".

Please please please email me at my AOL address. Its Jumbledjillie@aol.com . Please type MPNST in the subject so that I can identify the content of te mail before I delete it with all the spam I get.
I am so excited and can't wait to hear from any of you, and all of you. Us Malignant peripheral nerve sheath tumor Guys have to stick together, don't we?
Once again my email is: Jumbledjillie@aol.com
Its been great reading your stories and I hope all of you are well and happy :)
God Bless
Jillie

MJ1006
Posts: 9
Joined: Jun 2005

Hello, My name if Michelle J. (MJ1006). I have high grade soft tissue sarcoma. Last June of 2003, I underwent a left radical neck surgery, the tumor was 10 + size, The even removal part of my left shoulder that tumor was also inside in the muscels back there, So in Sept.04, I went through Ifosamaide chemo, x4 cycles, then in April 05, the tumor repeared in the neck again, Surgery again but this time with internal radiation. So now I'm strugling with this dieased again, It return again and also has metasized in the right lung, (there very small but there two places as there. So today I under went PICC line insertion. Because I start another trype of Chemo
DICT and adramycin. So I'll have 5 days of hell week again. Then hopefully in Dec. of 05, I "ll have my strenght for another surgery to remove the dead tumors in the lungs and neck. Having sarcoma never ends. You try not to think about it but sometimes the pain Because somebody you have meet w/ cancer is in worse shape than myself.
MJ 1006 or Angel34mj@aol.com ( I'm like you enter the word sarcoma before I open my mail.

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