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ET, HYDROXY AND MELANOMA

I turn 60 in September, ET jak2 positive. My consultant today said, they will be looking to start me on Hydroxy in September. Having had a malignant melanoma treated 5 year ago, and reading that the drug increases risks for skin cancer, has anyone else any thoughts. My platelets have been around 420 to 580 for the 10 years of my ET, Currently on low dosage aspirin only. Any examples of questions to ask consultant at my next meeting, thank you

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Hi, I've had PV since 2007. I then had malignant melanoma in 2009 followed by basal cell carcinoma in 2012. I started Hydroxycarbamide in 2013 and have recently had another basal cell carcinoma removed from my face. Due to this (& the fact that hydroxycarbamide was failing to control my red cells) my consultant decided the best option would be to swap over to peg interferon which doesn't cause skin cancer. I don't know for sure if hydroxycarbamide was to blame for my latest skin cancer but I would advise you to discuss this with your haematologist due to your history of melanoma.

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Hi Tigger. ET Calr Type1 diagnosis in June 2018 with Hydrea in July. I have had 3 melanoma and 2 basal cells before Hydrea. That was 2 - 4 years ago. Just had some precancerous stuff frozen from scalp. I am ok with it all, but I am sure to have 6 month skin checks. I also watch myself for mole changes. All good so no stroke, etc.. I am 60, last month. Take care,

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Hi there,

I there, I have PV Jak 2 positive and same as you, platletes not to high, on baby aspirin. I'm 57 diagnosed at 51. My Haemotologist said it is their 'protocol' to put people on hydroxy at 60. I questioned this and she said their is no rush if my counts stay as they have (platlets fluctuating 520-580. HCt 45 ish with some venesections. Just thought I would say....

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Good job!! your platelets are really low to be starting HU!!

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I was on hydroxyurea for 4 years without difficulty. Then I developed an ankle wound that would not heal until my doctor told me to stop HU. HU interferes with DNA synthesis. It is a low cost drug that will reduce blood counts but it is also a low-grade poison that can have serious side effects when used for a long time. I am now on Pegasys. Some hematologists (Silver, Kaladjian, Hasselbalch) believe that interferons should be used at an early stage with PV and ET to prevent progression and clots.

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Thanks for all your helpful responses, im making a list of questions to ask my consultant at my next appointment.

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I think, and correct me if I’m wrong somebody, one of the contraindications to Hydroxy is to keep out of the sun, which, of course is linked to developing skin cancers. Not suggesting at all, Tigger, that you do or would do this but I guess it helps to be aware! Much love, Poll x

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Thanks Polly-V. Yes Im very carefull use sun cream daily and cover up etc. I am just concerned that with being at high risk of skin cancer, does Hydroxy increase the risk. thanks

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As my father died from skin cancer and I have had moles removed I would ask for an alternative treatment but I am still only on aspirin and my levels are at about 980. Maybe its my age but my treatment plan says do not change from aspirin until they reach 1500.

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Hi how old are you? My platelets were around 650 but due to age and high haematocrit I started Hydro

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hi Ill be 60 in September and my bloods are fine. I was told because of my age, they want to start Hydroxy

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I’m 47 so a bit younger but I have had it since my 30s if not longer

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Hi I would say it depends on your symptoms, can you live with them? I had many for about 7 years, I kept going to the GP with various problems which I now know we're related to ET. I was told when I was finally diagnosed at 65 that I should have been given asprin when a high platelet count was picked up in my late 50's, they just kept an eye on my count for a few years with regular blood tests but the heamatologist said this was wrong. She said 60 was the age they normally put patients on a platelet reducing drug who have high counts, mine was over 1000 at the time. I suppose you have to consider the risks of not taking drugs, blood clots, heart attacks, DVTs. Although I don't like taking Hydroxy it has improved the symptoms I had before my diagnoses enormously and I feel it protects me from the risks of not taking it so it's a necessary evil in my view.

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Thanks Linda1950, One of my questions for my consultant will be around risks, ie my counts never been above 520, no TIAs etc, get fatique and headaches. So I guess I need to know what exactly hydroxy will do for me, I take aspirin which thins blood, but dont know what risks there are with my blood counts at present levels against the higher risk of skin cancer taking hydroxy. Im sure Ill get all my questions answered in August to make an informed choice

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