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ppl with malignant fibrous histiocytma (MFH)

dizzyblonde51
Posts: 2
Joined: Apr 2004

my husband and i whould like to talk to ppl with this diease and see what they are going through and we will share what he is but we whould like to know that there are ppl out there and that he is not the only one or that he feels that he is not the only one out there with this diease THANKS

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi, This is all fairly new to me.My daughter was diagnosed with Magligant Fibrous Histiocytoma in Jan 04.Since then she has had many set backs some not even documented that I can Find,or the DR.If you would like to chat here is my screen name Dmama718. May be we can help each other from what we have learned.

AuthorUnknown
Posts: 1564
Joined: May 2006

HI if there is any one out there who has a child around 18 that has Malignant Fibrous Histiocytoma and has had leg salavage surgery that would like to talk here is my email address dferringer@mcihispeed.net thanks

Louisa47
Posts: 2
Joined: Nov 2004

Hi Dmama718 & everyone,
Perhaps, I can help you in some way. I am not 18 by any means, but 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.

mummyqueen
Posts: 2
Joined: Aug 2005

I was diagnosed with this 4.5 years ago. Went to mayo, and was perscribed 7wks of radiation. Was told cemo wasn't any more effective. Have had reocurrance 4mo. ago in exactly the same place, even though docs said it could NEVER come back there (lower lt leg beside fibula), Have had 4x7'of muscle/skin removed and replaced by a skin flap from the back of the same leg which has left me unable to control my foot. I'm new at this (chat rooms), and from what I'm reading here, my treatment is a lot different than yours. Can anyone tell me similar experiences?

rpd
Posts: 2
Joined: Oct 2010

Hi there Louisa47. I'm happy to hear that you're doing well! My son was 16 when he was diagnosed and had a below the knee amputation. He's doing very well and getting along well with his prosthetic. Have you had any recurrances? We've just found out that the CT of his lungs have shown something suspicious and it will be repeated within the week. Have you heard of, or know of anyone with recurrances? How long after finishing treatment? Thanks for your time.

rpd
Posts: 2
Joined: Oct 2010

Hi there. My son was diagnosed with MFH in June of 2008. He had a life saving surgery (vs limb sparing), and had a below the knee amputation. He completed 10 months of chemo and is doing quite well. He is employed full time and gets along well with his prosthetic. Recently he has had something suspicious show up on a CT scan of his lungs. At diagnosis time, he had 6 nodes/nodules or malignancies in his LLL but after 3 treatments, they disappeared and never resurfaced. This new finding is in his RLL and we're having a repeat CT scan in the next week. I'm not convinced that this is anything significant, but I'd be foolish to think that there isn't a possibility of recurrance. How old was your child at diagnosis? How are they doing now? Any recurrances? Any problems? I'm just interested in the long term prognosis. We were told that there is a 30% chance of recurrance within the first 5 years. I hope to be able to keep up contact with some other parents and survivors on here. Thanks for your time.

Crr
Posts: 1
Joined: Nov 2004

My husband also has fibrohistiocytoma. He has had five surgeries in five years and is scheduled for the sixth in December. We are investigating alternative medicine and hoped that someone out there has information for us. Let us know how you are doing. You aren't the only one.

shareing
Posts: 1
Joined: May 2009

Hi
My wife has very recently been diagnosed with M.F.H. and is scheduled for
surgery within 2 weeks. It is not of the bone, but in the extreme upper right chest area. I don't have a lot to offer you at this point but feel
we may be able to share some information as time goes by and we can monitor the results of the surgery.
I'm told this is not a common type of cancer.

wilfadden
Posts: 1
Joined: Jun 2009

my name is wil .. i was diognosed with mfh of the bone in april i've been doing cheemo and i'm do to get lim sparing surgery thev end of july. gonna loose 7 inches of my left femur and my knee will get reconstructed..my whole body hurts and i'd like to talk to someone with the same thing...

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