Radiation Induced Morphea

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mainegirl
mainegirl Member Posts: 62
edited March 2015 in Radiation Therapy - Before, During, and After

Has anyone else experienced this?  Six months out from my radiation treatments I developed a thickening of the radiated area, red and blistery in some areas, yellow in others. I have now had this for 8 months. After seeing all my doctors (Oncologist, Radiation Oncologist, plastic surgeon, etc) I went to a dermatologist who prescribed a steroid cream. 3 months later no better. Had a biopsy done this week and Radiation Induced Morphea is the diagnoses. Very rare; 2 in 1000. No real treatment as Prednazone & Methotrexate are used for "regular" Morphea, but if history of breast cancer not allowed. I'm stumped!  This may be why my implant failed and I had to have it removed!  Causes extreme hardening of the tissue. I had been getting myofacial release therapy, which felt good bit really hasn't helped this situation. Just wondering if I'm all alone in this??  

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  • lane4
    lane4 Member Posts: 175
    edited June 2014

    mainegirl - in the 4+ years I've been on this forum, I only remember seeing one other member who mentioned this. It must really be rare, as you said. Maybe you could connect with her by using the search box on the left side of the screen to search radiation induced morphea. I hope you can find more information; I'm sure you do feel alone. ((Hugs))

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  • Louanne
    Louanne Member Posts: 101
    edited June 2014

    mainegirl, I'm so sorry you are going through this. I'm going through rads right now. I have 4 more whole breast treatments, then 8 boosts. I'm seeing a little brown color around the outside of the areola. I had a quick look about Radiation Induced Morphea. In the study below they mention tamoxifen. My MO said I couldn't start tamoxifen until I finish rads.

    http://www.jmedicalcasereports.com/content/2/1/136

    "There is no definite correlation between tamoxifen use and the development of RIM. However, tamoxifen can induce TGF-β secretion and increase lung fibrosis in breast cancer patients receiving both tamoxifen and radiotherapy 8]."

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  • mainegirl
    mainegirl Member Posts: 62
    edited June 2014

    Louanne, thanks for your kind words. I hope your treatment goes well!  I had also read that comment about Tamoxifen. I am on the Aromatose Inhibitors for post menopause women. So, it is doubtful that prompted this condition. Appreciate your reply!

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  • mainegirl
    mainegirl Member Posts: 62
    edited June 2014

    lane4, good idea. Thanks!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    Hi, mainegirl. i had never heard of this, so i did follow the link that louanne provided. then i did a google search and found this:

    www.ncbi.nlm.gov/pmc/articles/PMC/3470793/     And apparently, in that case, they were treating with methotrexate, which i thought they did use to use for breast cancer patients, and topical steroids, and topical hyaluronidase. i know i was given a topical steroid for another problem i had after treatment of bc, and that was prescribed by tx center, they had no problem with it. i do wish you the very best anyway, so sorry that you are having to experience this. kathe

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    sorry, i didn't know quite yet how to make a link, i will try again, sometimes i can!   www.ncbi.nlm.nih.gov/pmc/articles/PMC/ 3470793  nope.

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  • mainegirl
    mainegirl Member Posts: 62
    edited June 2014

    thanks Kathec!  I appreciate you sending the link. 

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    no prob! i hope it helped a little. how is it going?

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  • mainegirl
    mainegirl Member Posts: 62
    edited June 2014

    Kathec, doing good. Now that I know what it is I can relax as I know it's not a recurrence!  

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2014

    yay, i am so glad for you. that is very true! anything IS better than that.! i hope that that is the last thing that EVER happens to you, that is quite enough!

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited August 2014

    mainegirl, just wondering how its all turned out. and i was wondering why they wouldnt give you prednisone, either! they give us the stronger one, dexamethasone, during infusion. dexamethasone is is like prednisone on steroids! (heh heh) just kidding, they are both steroids.

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  • LAgal
    LAgal Member Posts: 1
    edited January 2015

    Hi Mainegirl. I have Radiation Induced Morphea. Mine started several months after radiation. Most local docs didn't have a clue how to treat. Nothing worked to stop the progression. Finally I found Dr. Medzger at University of Pittsburgh. He prescribed a mixture of methotrexate and steroids for 6 months. It worked. The combination of the drugs stopped the progression. Over the years I did start seeing what I thought was morphea in other areas but the new areas were diagnosed as LSA. LSA, like Morphea is an auto-immune disorder. Now, 13 years later, the morphea has become active again. I will be starting the methotrexate again next week. The good news is that I am still cancer free . Good luck to you

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  • mainegirl
    mainegirl Member Posts: 62
    edited March 2015

    LAgal, sorry, I haven't been on the Boards in a while! Saw your note today. Glad to report I'm doing much better My docs would not put me on Methotrexate due to cancer history. But, I did go on Pentoxifylline, 400 MG 3 x's a day. It is a drug for Fibrosis and helps with increasing blood supply. After four months it has helped a lot. My Radiation Oncologist tried it as an experiment as no one has seen this before. Best to you.

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  • mainegirl
    mainegirl Member Posts: 62
    edited March 2015

    Tomboy, I don't know about their reasoning for not giving me methotrexate or prednazone. They just said with your cancer history it isn't advised. But, I'm doing good now and have been taking Pentoxifylline, 400 mg 3 x's a day. It is a Fibrosis drug that increases blood supply. It has helped - took about 4 months to see any change.

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  • agness
    agness Member Posts: 576
    edited March 2015

    Here is some useful info about using ultraviolet light to treat morphea:

    http://www.utsouthwestern.edu/newsroom/news-releas...


    Here is one study that looked into pentoxfylline and vitamin E to treat fibrosis:

    http://m.jco.ascopubs.org/content/23/34/8551.full

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2015

    Mainegirl, I am so happy that it is helping you, I hope it gets better and better for you.

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