myxofibrosarcoma (myxoid MFH)

In 10 years we will have a party!!!!

I started my radiation treatment 4 days ago. It was painless and I have not felt any side effects either.

I asked the therapist what the radiation beam is. She said it is photon. I was surprised to hear that. Can photon beam penetrate deep without burning the tissues along its way??? I am going to ask the radiation oncologist next week when I see him.

qksand 

I also started taking traditional Chinese medicine (TCM) which supposedly balances my ying-yang and improves my immunity. The only concern I have is the source of the herbs and do they have heavy meta contamination. I wonder if there is chemical analysis labs around that can analyze the soup from the herbs that I drink ??

A  friend of mine who is an acupuncturist. He recommends that I try acupuncture to boost my immunity as well. It would have no side effects. Anyone has had experience to share??

qksand 

 

 

On 4/6/2007 Qksand wrote:

I was recently dx high grade myxofibrosarcoma after surgery to remove a lump, at the right hip, thought to be benign. I found the lump only about 8 months ago and my gp based on MRI thought it was most likely benign and no biopsy was taken. Well, we should have approached it with the potential high risk in mind. Now, we have to seek expert help. Any suggestions and experience in potential spreading of this soft tissue sarcoma? I read that chemo is not particularly effective.

 

 

 

Hello.  I was diagnosed a year ago with myxofibrosarcoma in my left buttock.  I was lucky enough to have insurance that allowed me to self refer to an oncologist, which is what I did when I felt that lump below my left hip.  I found an oncologist that had a name that sounded american, so I could be sure to understand everything she had to say, and I also looked for someone close to home.  I found Dr. Marsha Fink, Pacific Coast Hematology and Oncology and spent the last year in treatment.  First was a biopsy (the night of my first visit), followed by a major resection, followed by three sessions of Chemo, (AIM...Adriamycin, Ifosfamide and Mensa), then six weeks of radiation then another three sessions of chemo.  This chemo is specific to Fibrosarcoma, it isn't a quick little visit to the oncologist, sit in a chair and leave...it is hard core week-long hospitalizations for each session.  I spent a total of 132 days in the hospital last year, but I am here today, back at work, still in pain, but in remission.  If you have any questions, you can write me and we can exchange phone numbers...I am so sorry to hear about your diagnosis, but I can give you moral support, a friend who knows what you are going through and tons of support groups...like chemo angels, who are god-sends!  Hope to hear from you...I wish you well!  Sandy

I have been absent from this message board for 6 months.

During that period, I have had two follow up examinations and both are negative - no recurrence nor spreading. So far so good. Each examination involves x-ray, CT of the chest and MRI of my right hip, ultrasound of the lymph nodes at the right groin.  

As a by-product of the multiple image studies, they found nodules in my thyroid which turned out to be benign and "severe calcification" at LAD coronary artery which turned out to be moderate and am going thru Lipitor+baby aspirin treatment. 

The resection surgery removed a large chunk of muscle at the right hip. I have recovered, my doctors said, well. However, the hip joint felt stiff after sitting for an extended time. I do treadmill walking 3-5 days a week. When the weather warms up, I'll try swimming which should be easier on the joint.

A friend of my friend was dx with a large lump of sarcoma at her abdomen. She is going through with chem and I heard she wanted to stop after the4th session with 2 more sessions to go. Must be painful.

Thanks, Sandy, for your support. Hope all is well with you.

 qksand

 

 

 

Sandy, thanks for your msg.

It sounded like we had sarcoma at very similar location. I felt the lump just off the right hip joint. It was about 2.5cm large when first imaged with MRI. 5 months later it was still 2.5cm. When it was surgically removed, it was about 4cm long. A resection was done and it was about the size of my palm.

I was told by my sarcoma team that there is no effective chemo. So, right or wrong, I was spared with chemo and only treated only with radiation. Hope it works for me.

Glad to know you are in remission. Keep up the spirit. The world is a nice place to be in.

qksand 

I had my anniversary examination and all results were negative (good).They will dropped the CT and MRI scans for the next exam. That's good news.

The hip joint is still very stiff and I have stretch it often. Neverthless, I can walk and move about with only a hint of problem.