Dermatomyositis/Ovarian Cancer

I was diagnosed with Dermatomyositis last week. Feel so unwell at the moment. So much pain. My Ca125 levels have been going up. Now got to wait to see if cancer back as often with Dermatomyositis rears its head when cancer is there. Does anyone else have this? Im so desperate to find others who gave or are experiencing this. My consultant who treats me for the cancer doesn't associate cancer with this but the dermatologist does... so im in limbo!!

17 Replies

  • Hi Ricky,

    It is nice to hear from you again (albeit for the wrong reasons)

    I have never heard of this condition... but I have now looked it up... I don't want to add confusion and these links might not be of use...but I thought I'd pass them on to you.

    I know some links are oldish but you might glean something from them... and I hope they are of some help. (certainly an eye opener to me)

    You are still in my thoughts best wishes love x G x

  • Hi Gwyn. Lovely to hear from you.. and I hope you are well. Yes its definitely an eye opener this Dermatomyositis. Its absolutely changed my life. Thank you for all the links... some of the info I haven't seen before!! So I'm really grateful. Having my Ca125 done tomorrow so will be interesting if gone up even more... hope if it is my consultant will sit up and do something!! Take care and Thank you xxx

  • I have one friend whose ovarian cancer was diagnosed because she developed dermatomyositis and they investigated further. Her cancer was diagnosed at stage 1c and she is doing well with no recurrence 4 years post diagnosis. The dermatomyositis resolved when the cancer was treated.

    Hope all goes well for you!


  • Barbara. ... Thank you for your reply. I'm so happy that you have almost told my story of Ovarian Cancer. I had Dermatomyositis before diagnosis and when I had the op it to went.My argument is that my Dermatomyositis is back 2 years after the first but no one seems to think it is significant with maybe my cancer is back. Ive just been left to it. I see my consultant at end of month but he doesn't connect the 2!! I have never felt as ill as I do now. I keep telling them but nothing. I feel like its a waiting game till the cancer appears! Thank you for reassuring me im not the only one who had this same scenario. X

  • I have psoriasis which goes with chemo and now I have a recurrence, it's back. I'm back under the dermatologist who's done well for me. I hope you get things sorted. Xxx

  • Hi Tina B. I'm sorry your Psoriasis is back... not nice. But its good that Dermatology are helping you. Do you or have you taken the steroid Predisone? If so how did you get on with it? Thank you so much for your reply... and good luck eith your Psoriasis xxx

  • Thank you Tina, for the insight. I find it interesting to learn that psoriasis goes with chemo. May I ask which chemo exactly did you have that produced this effect?

  • I was on single agent carboplatin. I have Exorex and doublebase gel and very potent Dermovate. It's improving but I can't have Acitretin as my dermatologist says chemo is the toxic limit. I had a long remission after chemo and my oncologist says this happens a lot. T xx

  • I heard of this in connection with ovarian cancer when I came out in spots last summer had me really worried

  • This is my big worry. I had this rash before I was diagnosed then went after my surgery. But now its back I have the rash everywhere... my face scalp chest thighs back arms!! My muscles gave had it the pain is unbelievable. I can no longer do much at all but sit all day. Getting dressed is a nightmare. But my consultant in December says it has no link.!!!!!! But it did before...!!! I am absolutely terrified when I see him at the end of April as its been nearly 4 months and if the cancer is back then its been 4 months and no one has done a thing... my ca levels had doubled but were still just inder 35. Ca being done tomorrow. . So will see what they are .... I cry every day as I dont know how to get through the day... pathetic when I dealt with the cancer.. but this Dermatomyositis is a whole new ball game sadly.... x

  • It must be a nightmare is it itchy? Other than the rash have you had any other symptoms I would be encouraged by a low CA125. Get your consultant to explain why they don't believe your skin condition is related to the cancer this time. It's a natural reaction when you are worried that the cancer is back it's normal to feel panicky and worry but less you are seriously ill it's ok to wait and you never know everything might be ok.

  • No not terribly itchy. The main symptoms are the muscle degeneration the pain it brings... ie doing my hair.. ironing. Walking etc. Also told it can be with me forever.. cannot go out in the sun. I had just got back into walking and running but now struggle to walk 200 yds!! My life has completely changed. Got to say I am very frightened of this illness.. and the future. Thought I was going to be ok.. feel sad for my hubby. Just been given early medical retirement so that helps financially. Keeping positive...or trying ha ha!! X

  • I have felt much the same way I am not experiencing your pain but the makes running very challenging and I feel I am gradually being eroded away but I look good so of course I can't be seriously ill can I?

  • I too am shattered. I cannot just get up and go out anymore takes me 3 hours I have to keep sitting down. So annoying as I live to be doing things. For me its the 5 mile walk every night with hubby and dog I miss most!! I feel sick a lot too. We are very interested to see what my ca levels are.. my consultant will be very shocked when he sees me as I look purple with the rash!!!

    Have you been diagnosed with this too? Yes if we look well then thats good lol x

  • No I was diagnosed with nodular purigo. I have scars all over my body from it. The dermatologist told me that they don't really know what causes it but can be linked to conditions that suppress your immune system and sometimes an indication of a more serious underlying condition.

  • Are you claiming any DLA sounds like you might be eligible for high rate mobility and the care component as well?

  • Hello, I hope you are feeling well now, I am having tests for Dermatomyositis, I was diagnosed with Fibromyalgia 7 years ago but they think it may have been Dermo all this time. I only had a small rash on my elbows before a bad bout of Fibro. but now I have the redness and lumps on my face, elbows and chest, flaky skin and lesions on my hands with Grottens Plaques on my knuckles. All the websites I have read state that if you get this illness late in life it can be a sign of some sort of cancer. did you find this in your research.

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