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Myxofibrosarcoma

suzie sunshine
Posts: 15
Joined: Mar 2010

Hi,
Would like to have conversation with somebody that has been diagnosed with myxofibrosarcoma.

Grannyannie0219
Posts: 1
Joined: Jun 2011

My husband was diagnosed with myxofibrosarcoma on 4/2010. At that time he had the tumor removed surgically and did well for a year. Then the cancer recurred. It is now in his groin area and he is undergoing chemo at Fox Chase Cancer Hospital in Philadelphia. They are talking amputating the leg and hip area if the chemo does not work. I have a lot of faith in the doctors at Fox Chase and whatever the outcome I know it will be a good one.Please respond if there is anyone with similar experiences

suzie sunshine
Posts: 15
Joined: Mar 2010

Hi Grannie Annie,

My thoughts and prayers are with you and your husband. I hope the chemo helps your husband. My sarcoma was on my upper thigh and last year I had two operations and 34 radiation treatments. Because myxofibrosarcoma is so rare, it's hard to find a lot of information on it. Occasionally there are clinical trials that are available. I would consider this option before amputation.

Suzie sunshine (Joni)

MELDUSKI
Posts: 1
Joined: Oct 2011

hi Grannyannie,

By this time I hope your husband is doing fine.

I am in similar situation. I had been cleared for 16 months after having surgery chemo and radiation then showed in my lungs during the routine 3 months chest Xrays. Had bronch, and a wedge of my left lung where the sarcoma was excised, last aug. 3 2011. I will have surgery again on nov. 2 on my right leg (original site) which had recurrence. It is overwhelming.

I am in Ohio, being seen at University of Michigan Comprehensive Cancer Center and at Ohio State University.

Chez
Posts: 23
Joined: Nov 2009

Hi Suzie
Just had my 6 monthly CT scan check up...Results is still clear....All the best
Chez

florida here
Posts: 2
Joined: Sep 2013

hello, everyone. i am writing here about my best friend who was diagnosed with a stage iv myxofibrosarcoma several months ago. for about a month she said she thought it was a hernia. that was time lost on not receiving medical attention. when she did go for scans, and appointments, more scans, and dropping the ball herself, as well as the medical community having dropped the ball, it was growing in her groin. i went with her to md anderson for the first visit with her oncologist and radiologist. she had been everywhere trying to find someone to just remove the tumour, but being self-pay and without insurance wasn't going over famously either. everyone mentioned amputation, and she would not hear of it, so she kept searching, and ran out of options, finally wound up at md anderson because she hated a local oncologist/orthopedic doctor.

 

i could smell her in the car on the ride over to md anderson. when we were inside of the room, and bandages coming off, the first thing her oncologist said to me, ''have you seen this?'' to which i replied that i had not- ''i am seeing it with you for the first time.'' i did see it before it bursted through her skin and fell off, leaving a huge, stinking, hole in her groin which appeared to be seriously bruised. there were also several nodules similar in appearance to the first time i did see her oval-shaped, brick hard lump underneath her skin. the room smelled so terrible, i wondered how i would last in there with my dear best friend? a nurse cultured her wound site, and the doctor told me in the hallway, in private, that it was the worst he'd ever seen. was it because she waited for several months? she tried, but she also had placed a lot of faith in holostic practices. she thought the reason a big piece of the tumour fell off was because of all the holistic treatments to cure the cancer, but it was dead tissue. 

 

the stage is at iv, and she refused to be admitted to any hospital when the doctor said she had serious infection. she went home with three antibiotics, and would have wound care. he wanted to start radiation the day after tomorrow- the first visit back would be for mark up and mapping. her radiation would begin on her 63rd birthday. i was there for it, and then again today, and i will be there tomorrow. he wants three weeks of it to shrink the tumour which is large, and inside of her thigh pressing and pushing the muscle around. she cannot walk with ease whatsoever. the scans from months ago were all clear. the lungs have involvement now, he said metastisized, and chemo would not even be a possibility until the wound heals up. he hopes the radiation will shrink it enough for her to have surgery. she is not thinking amputation, but i am quite sure that's what i heard him say due to the location of the tumour.  that amputation was still likely even after radiation. the lungs and their spots? she refuses at this point to consider chemo.

basically, he told her more or less, that the radiation is just maintance therapy. there is not much else.

 

i hope to hell she proves everyone wrong. i love my friend, i'm grateful for our long friendship, i am happy for now, and appreciate the present. 

 

 

 

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