Malignant Fibrous Histiocytoma

naseem said:

MFH was found in my leg last month. I am going in for a second surgery this month. I just heard from my doc that a small lump on my right ring finger also has to come out. An MRI did not rule out it being a sarcoma as well. Did you have other tumors in addition to the one on your finger? I understand it would be highly unlikely two primary tumors would show up, but this seems a pretty unknown disease. How are you fairing now? Naseem

kflindquist said:

I hope your husband's surgery went well. I am 43 and was diagnosed with MFH in my abdominal muscle in 3 1/2 years ago. I had it surgically removed from that site 3 times, then it came back in my lung. I had 5 lumps removed from my lung in Nov. 2003. Now it is in a lymph node. I start chemo on Monday, with adriamycin and mesna. What kind of chemo did your husband have? Any hints on what to expect from chemo, other than the obvious hair loss and nausea?

RAVEN25 said:

when i had my surgery, they told me there wasn't any chemo that worked. i'm due for my 5th surgery, for another skin graft,with radiation to follow.could you tell me if the chemo has worked?
i was first diagnosed in nov.03.
thanks, and good luck

KADickens said:

I was releaved to find some other people with this type of tumor. Now, after reading all of your postings I'm not sure if I should be or not. I don't mean that the way it sounded. It is just that we were given the impression that reoccurance was possible but not likely. After reading your postings it seems that most everyone here has had a reoccurance. Not very encouraging.

My husband was diagnosed back in Oct. of 2003 with Malignant Fibrous Histiocytoma, on his forehead. 3 surgeries later, including a cranialotomy (sp), we are now going through radiation. We too were told that chemo wasn't an option. That this type of tumor didn't respond to chemotherapy. We are almost done with radiation. One treatment a day for 25 days and only 2 left. I was looking for information on radiation and what if any the long term effects could be that close to the brain. The Dr.'s of course don't want to tell us "worse case".
We were told my husband would need to get X-rays, CT Scans and MRI's on a regular basis for the first several years to make sure that it hasn't come back. When first diagnosed I had read somewhere that this type of tumor generally is found externally on the limbs and internally on the lungs. After reading all of your postings it scares me to think if it coming back or being in the blood stream. We are both 33 years old and this is just one of many obsticals we will be able to put behind us. I almost lost him about 11 years ago due to another medical problem, which is also very rare. To think that the end of radiation could only be the beginning of a much bigger battle scares me. Does anyone here know of a case when the cancer has not come back after removal? I just wondered what the odds were. What about (I know I won't spell this right) heredity? What causes this? I know these are probably questions that our Dr. should answer. Believe me we have ask all of them. I sometimes think they must have all gone to the same school of avoidance. Any information any of you might have or suggestions of places to go on the web I would appreciate it. My email is kerriedickens@cox.net

Thank You for letting me ramble on..

dgrayson said:

I have not heard of MFH in the fingers either, but definately the extremities. My husband, 42, was originally diagnosed with MFH in his thigh in 2000. He went through 3 rounds of chemo, 10 radiation treatments, then surgery to remove the tumor and entire muscle. Two more rounds of chemo followed. He went for check-ups every 3 months. A recurrance was found in his right pelvic area and a hemipelvictomy(amputation of hip and right leg) was performed. He then had 5 more rounds of chemo, an experimental drug, and this did not work as this week another recurrence was found. He has a soft tissue mass in his abdomen and is scheduled for surgery Tuesday at MD Anderson. He are very glad that we found MD ANderson and their team of doctors. My husband had had a very positive attitude and I do believe that is what has gotten us through 3 more years. Just keep doing what they tell you and just keep fighting.

lifelinemom said:

finger cancer
yes, sarcomas occur in fingers. In 1991, i had an aggressive cancer in my middle finger left hand. After te second surgery to remove it all, the whole left hand was removed to get a one inch margin around the tumor. No chemo or radiation was given. Metatasis occurred in my lung, but i chose to keep my lung and pray away the tumor. 3 months later the Ct scan showed no cancer cells. The prognosis for me was a year to live, but as you can tell, 18 years later, by the grace of God, I'm alive and cancer-free.

kat0417 said:

MFH
My daughter has had MFH since June 2001 in the brain. She has undergone 10 brain surgeries and 1 facial surgery to remove tumors deep into her neck. She has all of the chemo's, 32 treatments of radiation, Gama knife and nothing has helped. We were at MD Anderson in Houston, TX for 8 months last year with no cure. She is now on a trial of tamoxifin. This has not helped either.. As of May 2010, they have given her 1-2 years to survive. It depends on the tumor in the brain. If it grows into the brain she has until May 2011. If the ones in her neck grow she has until May 2012. We have never met anyone with MFH in the brain. No protocol for treatment. Chemo nor radiation has made her cancer free, just her survival period was extended from the normal 5 years to 10 years which we are thnakful for. We continue to lean on God's grace and will. GOd Bless you all. Hope to hear from someone soon.

jjb2497 said:

malignant fibrous histiocytoma
did you have malignant fibrous histiocytoma. It is hard to find people on this site that have that kind of Sarcoma. I was diagnosed in Feb 2010, had 2 surgeries, and radiation. Your post was encouraging because you are a survivor.

lifelinemom said:

finger cancer
yes, sarcomas occur in fingers. In 1991, i had an aggressive cancer in my middle finger left hand. After te second surgery to remove it all, the whole left hand was removed to get a one inch margin around the tumor. No chemo or radiation was given. Metatasis occurred in my lung, but i chose to keep my lung and pray away the tumor. 3 months later the Ct scan showed no cancer cells. The prognosis for me was a year to live, but as you can tell, 18 years later, by the grace of God, I'm alive and cancer-free.