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malignant fibrous histiocytoma (undifferentiated pleomorphic sarcoma)

lmcraig
Posts: 7
Joined: Jan 2014

My mom had a 14x9cm MFH sarcoma removed from her hip in June 2012.  After 36 radiation treatments and multiple complications including having to wear a wound vac for over 4 months, then wet-to-dry dressings, last CT in September showed mets to lungs...aggressive mets to lungs.  Chemo started same month, last CT showed no more growth but minimal shrinkage of tumors.  Waiting on results of last CT which we will receive tomorrow.  I am finding it extremely difficult to obtain ANY information or blogs recounting personal stories for this type of cancer with metastasis.  People post, then there is no continuation which is extremely disturbing to me.  To anyone who is reading this, I am asking to hear from you.  The information I am finding recounts an abysmal prognosis.  My mom has the idea that she is going to beat this, however I am a registered nurse and am quietly and sadly nowhere near as optimistic.  FYI: after chemo started, her wound opened back up and granulation of tissue halted.

ISurvivedCancer's picture
ISurvivedCancer
Posts: 2
Joined: Jan 2014

Hi lmcraig

 

your Mom's first defense is she going to beat it.  "Beating it" may be a few months or years.  No matter how long she beats it, it will be her victory.   You may find support at the following websites:

http://www.sarcomaalliance.org/

http://www.curesarcoma.org/

 

 

lmcraig
Posts: 7
Joined: Jan 2014

Thank you ISurvived...hope you are doing well

PLEOMORPHIC SARCOMA
Posts: 8
Joined: Dec 2014

My path UNDIFFERENTIATED PLEOMORPHIC SARCOMA (MALIGNANT FIBROUS HISTIOCYTOMA,
STORIFORM PLEOMORPHIC TYPE), HIGH GRADE SARCOMA, GRADE 3/3,  it needs to say "With Giant Cells" at the end.  this cancer is rare of the rare.

 

I have have found only three studies worldwide that covers "With Giant Cells" 100% mortality due to the tumor size, meaning that by the time it was removed it had allready spread.  The study size was small  20,24,27 people  as compaired to 2,387.

 

I have a list of sites that give prognosis estimates, but unless the cell types are matched up then not much use to you.

 

heterogeneous
gross cut surface. Morphologically, this tumor involves skeletal muscle
and is composed of markedly pleomorphic and spindle tumor giant cells and
focal histiocytoid cells, brisk mitotic activity (> 20/10 per high-power
field) including atypical forms and geographic necrosis. The stroma is
mostly collagenized. There is a mild lymphoid response to tumor. Vascular
invasion appears to be present or possibly pushed into on slide 3. No
osteoid is observed. Surgical margins are clear. Immunohistochemical
stains on paraffin-embedded tissue demonstrate the tumor cells are
negative for SMA, desmin, C34, pankeratin, CK18, CK 56, and S100 protein;  = sarcoma  to most doctors

wifeofUPS
Posts: 9
Joined: Dec 2016

My husband has been recently diagnosed with undiff pleo sarcoma...he will start radiation in feb 2017 and I am finding the same thing as you...people post and then nothing. I am trying to find our all the what to expects and helpful insight. and it's hard to find similar situations. 

 

Here is my story i posted on FB trying to search there for insight as well...how is your situation now??

 

I am the spouse and caretaker of my husband recently diagnosed with undifferentiated pleomorphic sarcoma. In brief, he had a tiny hard bump on his outer thigh that he just noticed one day. Then after about 4 months it became more noticeable and kind of painful. Within the next two months it really grew fast, was obviously larger, tender to touch and very painful. He had surgery to remove a misgiagnosed lipoma. Biopsy resulted in UPS with positive margins. A cancer clean out surgery was performed leaving an open wound to heal before 7 weeks of radiation can be done (scheduled for 02-2017). His tumor was high grade 3, Stage IIa, 5.1cm subcutaneous tumor.

 

Now just in search of information to help educate, prepare, plan and know what to expect as treatment continues.

mrbw
Posts: 1
Joined: Oct 2016

Hello.  As you all know, sarcoma is the rarest of all cancers.  This is my first post.  My husband was diagnosed in October 2016.  The tumor on his upper thigh had grown to the point that it was impossible to attempt limb saving surgery until after radiation therapy. After 25 treaments, the tumor had shrunk significantly; however, the sarcoma had metastized to his lungs which was discovered when his lungs collasped.  With his lungs compromised, the surgeon would not attempt to remove the tumor in the upper thigh.  He began chemotherapy that included adramyicin and lartruvo.  After 2 rounds, the nodules in his lungs had grown, so the oncologists has started a new chemotherapy that includes Gemzar and Taxol.  His original tumor responded so well to the radiation that we were sure the chemo would work just as quickly and just as well.  He has just begun the new chemo.  

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