ET/melanoma correlation, Anagrelide (XAGRID©) and I.D.R.

[Fernsong]

Hello everyone,

I hope everyone is safe and well.

I have a few questions that I'm hoping someone may be able to shed some light on.

Firstly, I have ET Jak2+ and have been taking Hydréa for three months.

An irregular mole was found quite by accident a couple of weeks into the treatment. The mole was removed and tested; a stage 1 melanoma was diagnosed and a wide local incision was performed. The dermatologist assured me that there is no connection between ET, Hydréa and melanoma.

I also emailed my haemotologist at the time and have just received his reply(!). He states that he has done some research and can't find an argument for stopping the medication. He adds that in the meantime he will consult with the 'Regional Centre of Pharamco-Vigilance' (I live in France) and that if it seems prudent to take me off the Hydréa, he proposes 'another non-mutagen treatment: Anagrelide (XAGRID©).' Has anyone had any experience of this drug? I'm sorry to sound so dense, but I have always been painfully ignorant of all things medical!

I'm also feeling concerned about my fortnightly blood tests. Not being fluent in French + medical ignorance = PANIC! In the Hémogramme (hemogram?) section of my results, there is an 'I.D.R.' reading which has been increasing over the weeks and is now at 21,5, whereas it should be under 15 (on 21 January 2020 the reading was 13,9.) Does anyone have any idea what I.D.R. might stand for, bearing in mind that it might be a French abbreviation? Should I be concerned and seeing my Dr. and/or sending another correspondence to my haematologist? (And waiting another month for a reply! Sorry, couldn't resist that bit of snarkiness!)

Many thanks in advance, folks...

[Otterfield]

I have been on Anagrelide, on it's own and in combination with Hydroxycarbamide. For the first week or so I had bad headaches which cleared up very quickly. It also caused palpitations, which felt alarming but which settled down within minutes if I kept still. On the whole I liked Anagrelide.

[clubdino]

Unbelievable. I recommend finding a whole new hematologist who understands that there is a link between HU and skin cancer! That's infuriating. I'm sorry that happened to you. Just my opinion but I would never trust that doctor with my care ever again.

I should add that I think HU is usually associated with skin cancers other than melanoma but that doesn't matter because you have already proven that you are susceptible to skin cancer.

Link to paper:

ashpublications.org/blood/a...

[Fernsong in reply to clubdino]

You're right, Clubdino, it IS infuriating, but I just assumed it was normal practice. For people who have sworn the Hipppocratic oath, I find doctors and specialists very blase in their approach. I was told by the dermatologist that HU is certainly linked to skin cancers, but ONLY carcinomas, not melanomas. What do you do...?!

Thanks for your feedback and the link. Stay safe and well.

[clubdino in reply to Fernsong]

Oh trust me...I've had my fair share of crappy doctors. I had so many of them that I finally lost hope and refused to see a doctor for like a year or two. I had had enough. Only carcinomas...omg...I guess the dermatologist didn't bother to mention that you may not just get one basal cell carcinoma but you can get MANY. Somebody here posted about it happening to them. There are good doctors, mediocre doctors, and bad doctors. Trust your gut and no matter what they say always do your own research...which it seems you're already doing. You stay safe too. ❤

[hunter5582]

Having the JAK2 mutation predisposes you to a range of neoplasms beyond ET. This is very well known in the MPN treatment world. With a hx of melanoma, one would think taking a carcinogenic/mutagenic medication like hydroxyurea would be contraindicated.

Anagrelide is used to treat ET, but it is a third tier medication. Given that you have a JAK2+ ET, perhaps a PEGylated Interferon or Ruxolitinib would be a better choice. That would be something to discuss with a MPN-Specialist. Also discuss whether you need cytoreduction at all based on where you fall in terms of your individual risk level.

I would definitely get a second opinion from a recognized MPN-expert doc. There is only one doc listed in France, based in Paris - Dr. Jean-Jacques Kiladjian. Here is a link to the the whole list of MPN-expert docs. mpnforum.com/list-hem./ .

Do whatever it takes to access care from a MPN-expert doc. Regular hematologists do not have the level of expertise you need to receive optimal care.

All the best to you.