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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: 24
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. 

 

 

 

yellownut
Posts: 1
Joined: Aug 2016

Hi,

My husband was just diagnosed with high grade myxofibrosarcoma in the neck yesterday. He is 43 yrs old and had no symptoms except for the swelling in his lower neck. When the ENT doctor was getting the biopsy he had a hard time as the nodule was just above the carotid artery. They did a PET CT and found another nodule in the paratrachial region. I was wondering if there is anyone here who has MFS in the neck region. Thanks any response will be helpful.

Chall5666
Posts: 1
Joined: May 2017

Hi.

I'm so sorry to hear about your husband.  I'm not sure what happened with him as your message was from 2016.  I truly hope all is well with him.

I, myself, was diagnosed with myxofibrosarcoma just over two years ago; I was 49.  My Surgeon had never even heard of that Cancer before.  Mine was in my shoulder, close to my neck.  I would be happy to discuss this with you if you are still interested.

Corinne

 

 

minnmesh
Posts: 1
Joined: Mar 2018

I had a myxofibrosarcoma in my abdominal wall.  It was removed via two surgeries in summer 2017.  I had radiation treatments in fall 2017.  I have a seroma from the surgeries but no more sarcoma.

 

terrimc
Posts: 1
Joined: Jun 2018

I have been diagnosed with Myxofibrosarcoma after two wrong diagnosis.  I have had the tumor removed thinking it was a lipoma.  I have not started treatment yet.  I wanted to know if anyone has had chemo with this type of cancer?

ERB
Posts: 2
Joined: Sep 2018

My 63 year old husband was diagnosed with Myxofibrosarcoma in May. He had small tumors removed from the calf of his right leg in 2013 and 2016. Both times the pathology diagnosis was benign giant cell tumor. In April this year, a tumor came back at the same site on his calf. His surgeon sent him to a local oncologist, who diagnosed it as giant cell tumor again, on the basis of an MRI. The tumor was removed, but this time the pathology diagnosis was undifferentiated pleomorphic sarcoma. We were referred to UNC Cancer Hospital, who reviewed the pathology and interpreted it as recurrent high-grade Myxofibrosarcoma with positive margins. They think the tumors in 2013 and 2016 were probably low grade malignancies and precursors to the MFS. My husband had 25 days of radiation therapy, followed by a radical resection of the tumor site with plastic surgery in August. So far, CT scans of his chest are clear and there are no other signs of metastasis. We are praying this will be the end of it. I tell everyone I know to take small lumps and bumps on extremities very seriously.

kcelwood02
Posts: 1
Joined: Oct 2018
kcelwood02: Hi, This is my first time here. We have been dealing with my husbands cancer (Myxofibrosarcoma-high grade, tumor 6+cm lower left leg in deep tissue)  since 1/2015. They first did 6 weeks of radiation then surgery. It came back in 3/2017 and they had to amputate his left leg right below the knee. Now its come back again but in his lungs (8/2018). They said he had 20+ to many to count tumors, they are all over in his lungs so they can't remove them so the Drs. suggested we should try chemo but the Dr.s told us it is incurable and they are just trying to slow it down to give him a little more time. He has 6% chance to live a year with treatment. Has anyone heard of other treatments besides chemo? I'm hoping they have some test/trial group that he might fit in to. If you have heard of any treatments please let me know so I can research them. I know that what works for one person may not work for another thats why I am looking for any help I can get. The biggest problem with Myxofibrosarcoma is it was only given its own catagory in the mid-2000's (I believe in 2003). My husband was in  a 13yr study the Mayo Clinic Rochester, MN just ended last year and he was #11 in all that time. And while I am glad that it's rare I wish they new more about it. So many of the studies published include all of the people that were before (2003) they gave it it's own catagory the others had low grade, slow moving, and had very low reaccurance rate ( fibrous histiocytoma) so the information is very misleading with regaurds to treatments, survival rates & reaccurance rates. 
 
 
 
 

 

FM
Posts: 2
Joined: Feb 2019

https://meetinglibrary.asco.org/record/83844/abstract

https://clinicaltrials.gov/ct2/show/NCT02929394

https://institut-curie.org/actualite/sarcomes/sarcoma-nanoparticles-optimise-treatment

hope these infos will be of some help.

I had a surgery for a myxofibrosarcoma grade 3 (fnlcc) 8x5 in my hip last month. I refused chimio/radio for the moment because I am convinced I am definitely healed. Let's see what time says...

Keep faith and be strong, 

Best rds,

FM
Posts: 2
Joined: Feb 2019

https://clinicaltrials.gov/ct2/show/NCT02672527

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