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Malignant Fibrous Histiocytoma

beebo's picture
beebo
Posts: 1
Joined: Mar 2001

Hi I had MFH in my right ringer finger which I had amputated. Has anyone ever heard of people with other finger sarcoma's?

madamraven
Posts: 1
Joined: May 2001

Hi I also have MFH sarcoma. I've never heard of it on someones finger. I know from experience that it can show up anywhere. So nothing surprises me. I have multiple tumors. Did you have to have chemotherapy? I'm still in treatment. Good Luck!! And God Bless

naseem
Posts: 2
Joined: Nov 2003

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

RAVEN25
Posts: 2
Joined: Jan 2004

I had a lump removed in Nov,03 and was told all it was, was a fatty lump.After the pathology report came back I was told I had MFH,stage 3.the lump showed no signs of cancer. After searching i went to the Washington Hospital Cancer Clinic and had the surrounding area removed, within that short period of time, my MFH had started to regrow.i also had a skin graft done on my leg.i'll be starting radiation this week, not chemo, as i've been told that so far they have not come up with any that works.i don't know how long the lump on my shin was there,possibly a year. but it grew after i had angioplasty on the leg, as i had no circulation. you could actually see the thing grow daily.that was the only place i've had it so far, but all my Dr's have told me, that there's an 80% chance it will return, where is anyone's guess.so far i have had 3 surgeries, but will have to have more MRI's in another month or so. Good Luck to you

dgrayson
Posts: 1
Joined: Nov 2003

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.

kflindquist's picture
kflindquist
Posts: 5
Joined: Feb 2004

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
Posts: 2
Joined: Jan 2004

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
Posts: 1
Joined: Feb 2004

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..

Louisa47
Posts: 2
Joined: Nov 2004

Hi. I hope your husband is better now. Perhaps, I can help you in some way. I have had MFH in the tibia bone of my right leg & underwent leg salvage surgery 3 years ago. It has been a long, hard road with the effects of chemo & not being able to walk, etc., but I am still alive & now doing OK. I would be glad to answer any questions or talk with anyone about my experience if it would help someone who has MFH. You might find some answers on my personal Web Page also. My e-mail address is littledollhouse2@aol.com.

kflindquist's picture
kflindquist
Posts: 5
Joined: Feb 2004

I'm taking adriamycin and ifosphomide. The research is not very hopeful on this. A lot of the studies I have read showed about 50% of the patients who had chemo for MFH had tumors that kept growing anyway. In about 30% of patients, the tumors stayed the the same size. So, only about 20% of patients had their tumors shrunk by chemo. Probably that is why your doctor said there was no chemo that worked. In my case, I decided it was worth a try. The lung surgery was pretty hard to recover from, so I didn't want to go through that again. I've only had one treatment so far, so it is too early to tell whether it is working. It will be another couple of months before my next scan. I'll let you know.

Have you had your 5th surgery yet? I hope it goes well for you.

kflindquist's picture
kflindquist
Posts: 5
Joined: Feb 2004

I took 6 months of chemo with adriamycin and ifex. Yes, it seems to be working. Several tumors have disappeared from the latest CT scan. I still have one spot on my left lung, but I am off chemo for a few months while I fight off a fungus in my right lung.

cely932
Posts: 1
Joined: Jul 2008

Hi, I also have MHF and had removed last sept07 and they did a resection in oct 07 and underwent 6 weeks of radiation no chemo because my radiation oncologist told me I don't need it and after 10 months it spread to my lung and getting a biopsy next week. I notice nobody mentioned what staged if it goes to the lungs... Is anybody are under Gemzar and Taxofere chemo??? please share me some experience same like mine..... thanks

lifelinemom
Posts: 5
Joined: May 2009

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.

jjb2497
Posts: 8
Joined: Sep 2010

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
Posts: 5
Joined: May 2009

Yes, I had mfh in 1991. At that time, there weren't any known cases of it according to my doctors. They had no protocols to go by, so they didn't know if chemo or radiation would work. A complete amputation was done 2 months after biopsy, because it had spread from the middle finger to wristbone. So far, the only metatasis was to my lung, but nothing was done medically for them....only prayer.

qksand
Posts: 6
Joined: Dec 2010

Very happy to hear your story and best wishes to your continued free of cancer.
My recent CT showed several growth of nodules in lung - highly probable metastasis.
You mentioned you had metastasis in lung but no chemo nor radiation and stayed away from tumor. Your praying worked. Any other probable helps? Would really appreciate your sharing.

qksand

qksand
Posts: 6
Joined: Dec 2010

I read with great interest of your posting "I choose to keep my lung and pray away the tumor". Was there other reasons that you choose not to have chemo or radiation?

qksand

kat0417
Posts: 2
Joined: Nov 2010

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
Posts: 8
Joined: Sep 2010

I am very sorry that your daughter has had so much recurrence. I was diagnosed Feb 25. I was thinking I would be happy if I made it til Feb 25 this year without a recurrence. That I would stop worrying so much. I don't know if we ever stop worrying. Your daughter is my prayers. Your whole family is in my prayers.

lifelinemom
Posts: 5
Joined: May 2009

How are you doing without your finger? Any reoccurences? Did you take chemo or radiation?
Do you still haveregular checkups?

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