Since posting I have been to a medical dermatological photographer who took photographs with dermascope and also photos for an AI software analysis. The AI analysis came back with 95% likelihood of malignant lesion. Now seeing dermatologist on Sat 22 June, 12 days from now, but quickest available. In the meantime, feeling panicked at the time that goes by.
I made a private appointment with a plastics hand surgeon. I was able to show him the lesion from a copy I had from the dermascope. He shares my concern, and he fitted me in urgently this Thursday. I am having a nail and skin underneath wedge biopsy, under local. All clinicians that I have met feel this was a wise move. Have tried to distract myself, partially succesful, but have a real sense of dread on this one.
I also saw my MPN specialist, who said it was to quick for it to be ruxolinitib and feels it is unrelated. My platelets reds and HB all still low but staying on same dose. On RUX for 3.5 months so hoping for stabilising bloods and increasing numbers over the next two months. I still feel exhausted, but enjoy not having sweats and itching.
I have been on different immunosuppressants since 2019 and read these are linked to melanoma in some patients. I also for the first time had gel nails in the last 2 Years and exposed my hands to UV light. My nails were pretty poor and this helped to strenghten them. Probably not a good idea either as some research suggests a link. Possibly premature, but anyone on the forum being treated for 2 malignancies at the same time? Hoping surgery will be enough…..
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artydutch
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Try not to worry too much....I know its easier said than done though .My mum and my sister have both had malignant melanomas, and after surgery to remove them they've had no recurrent problems.
It's always better to know about a problem....it then gets dealt with quickly, then treated .
You are not the only one with a MPn to have another cancer. Secondary cancers are a known risk. I expect you may never know for sure exactly what the trigger was. You are wise to act promptly and deal with it right away. Best of luck with the procedure.
Good luck on Thursday it’s good you are getting seen soon these things come along and worry us I must admit I I never heard of this so thanks for posting about it take care best wishes Poppy
You are in my thoughts and prayers for successful surgery and recovery. You did the right thing to question waiting and also very good the surgeon didn't hesitate to agree how important removing the lesion ASAP is. You are your best advocate! Thanks to you for sharing this part of your MPN journey. It's an excellent lesson for all of us to learn. Bless you.
Best of luck tomorrow, Artydutch. Hope the procedure is quick and successful. Do let us know how you get on. Good for you for advocating for expedited care!
Hope all went well yesterday with your visit. As others have mentioned, it's not uncommon to have multiple cancers once you've had one (unfortunately). Before I was diagnosed with my MPN I had a rare and aggressive skin cancer (Merkel Cell Carcinoma), after my diagnosis I had another skin cancer and also have MGUS (pre-cancer to Multiple Myeloma) and another pre-cancer years ago. I am not on any medication for the MPN besides aspirin.
It's so important for all of us to listen to our inner voices. If something a dr. says, does, or doesn't do, or doesn't seem right, run your concerns past another dr. . Worst thing we can do is think dr.s have all the answers and therefore we don't question them. I learned the hard way and ended up with sepsis and almost dying. Right when I had sepsis is when all of a sudden all of my numbers started to climb and eventually found out I had the Jak2 mutation. Always be your own advocate.
artydutch I am doing ok in spite of it all. For me, keeping my mind in the right place is a big part of the battle. I try to be positive everyday and remind myself of the so many reasons I have to be quite happy. With that said, I have my (down) days like everyone else lol. One day at a time
Try not to worry I had same nail problems. They did my op 2 years ago & biopsy came back none cancerous. The op was not problem they use excellent anaesthetic.
But took mine long time to heal & nail dropped off. Now healed but the new nail has grown with exactly same lesions as the old one before op . 🙈
I tried to get mine done without op but impossible unless they get bone sample below nail , hence op.
You will be fine . I had mine 3 years before they got around to op because it was Covid era . 👌 Julia . UK.
They had no idea of cause but seemed to think my ET recent diagnosis may had something to do with it. Scraping was taken of my bone but base of nail is still tender after 2 years but had further checks & all healthy but lesion in nail has still grown back as before . I am now on Interferon injections . But feel fit & no other problems . Julia 👌
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ET/melanoma correlation, Anagrelide (XAGRID©) and I.D.R.
Hens teeth, aggressive sarcomatoid sccs and ruxolitinib
Update!
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