ET, HYDROXY AND MELANOMA

[Tigger59]

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

[jazzyb]

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.

[CalrType1]

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,

[Boss1]

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....

[Hidden in reply to Boss1]

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

[charl17]

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.

[Magentas in reply to charl17]

This worries me! I just got diagnosed Jak2 ET, I’m 62 and a smoker, platelets 660. My haemo appeared happy to wait a bit (next blood count?) until I said ‘I don't want a stroke, though’ so then he gave me a script for HU. Apart from the dreaded smokes I have always tried to avoid poison in my body.

[Tigger59 in reply to Magentas]

Hi, I had my telephone consultation yesterday, I am now 62 and he is keen for me to start Hydroxy. Latest platelets 463. I go back to see him in clinic in 6 months to discuss. The main reason for starting the drug is my age. He has reassured me after speaking to dermatology, that an increased risk of melanoma is very small. Like you, its the thought of taking a drug. Against that, if it reduces the risk of a potential stroke it is worth it. I've got 6 mths to think about it, but its very difficult to know whats best.

[Tigger59]

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

[Polly-PV]

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

[Tigger59 in reply to Polly-PV]

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

[Jenny_F]

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.

[Kelly2 in reply to Jenny_F]

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

[Tigger59 in reply to Kelly2]

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

[Jenny_F in reply to Kelly2]

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

[Linda1950]

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.

[Tigger59]

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

[kp27kathleen]

I started HU 4 yrs ago and I have had 20 skin cancers removed in that time. I go to the dr today and hope she will do something.

[clubdino in reply to kp27kathleen]

Oh man...I would definitely be getting off HU if I went through that.

[kp27kathleen in reply to clubdino]

Went today and have 2 more skin cancers. Hemo says cut the HU back to 5 days. The hair loss really bothers me. HU is toxic to me

[clubdino in reply to kp27kathleen]

I would definitely ask about trying another medication. That's insanity.

[kp27kathleen in reply to clubdino]

For sure. Thanks

[Tigger59]

Hi, Update on my meeting with consultant, 4th Sept. I had a long chat with him, he was really interested in my concerns, talked about my lifestyle, current health and my platelets, which remain steady, below 500. He said the risks regarding Skin cancer if on Hydroxy, are low, and unlikely to increase the risk of malignant melanomas. He also said the age guidelines for going on to Hydroxy at 60 in the UK are being looked at and could possibly increase to 65. Therefore he was happy to postpone hydroxy for me and monitor my bloods . He did suggest having a fasting cholesterol test at GP as I haven't had that done, my blood pressure, fitness and lifestyle all good.

[givingITMybest]

Well, I have to say that this year I've bloomed with skin cancers. I've been on HU sincor 60's. e September 2019. Prior I had pre-cancer stuffed zapped ,but in the past six months I've had three excisions, a burn off and more zapping with a spray of some sort. I'll be asking my own doctor about this. I wear sun screen every day, but I believe these are from my youth. We did not have sun screen in the 50's and 60's