Hydro and MF

[Kelly2]

I am trying to find the post someone wrote about Hydroxyurea inducing progression to MF. Could you please repost it for me?

[Mazcd Partner MPNVoice]

Hi Kelly, what do you mean by your query, Hydroxyurea progressing to MF? Maz

[Kelly2 in reply to Mazcd]

Hi Maz! I read the other day here that Hydroxyurea can possibly lead to MF in the long run and it was even stated with which gene it exactly messes. But unfortunately I did not save it and cannot find the post now. There was even someone who had been on Hydro for years and had progressed and had this particular mutation? I am not even sure of the right terminology!

[jillydabrat]

I am confused with this question. Hydroxyurea is a drug so how can it progress?

[Kelly2 in reply to jillydabrat]

Apparently according to the post I read it can induce progression.

[OZland]

Hi Kelly,

Check out this article sciencedaily.com/releases/2...

[OZland]

Another article with Not guilty verdict

hematology.org/Thehematolog...

[Kelly2 in reply to OZland]

Thank you. Quite reassuring. The article is written in 2011 though.

[hunter5582]

Don't know which post you are referring to, but the notion that HU can make the disease worse is controversial. There is some research that indicates that it is potentially leukemogenic, but no consistent finding that this is so. ET/PV can progress all on its own to MF or to AML - so it is hard to say what is what. HU does interfere with DNA activity (cytostatic effect) and in so doing in can also break allele strands and interfere in the DNA self-repair function. There is not agreement on what this means in terms of risk to people taking it. All of the chemotherapies come with risks and benefits. Whether HU is the right choice for any individual patient is based on how that individual responds to it. I had toxic effects even at relatively low doses, so HU is not the best choice for me. Others seem to tolerate it better and benefit from it. Hope you are able o figure out what is best for you.

[Kelly2 in reply to hunter5582]

I am so confused right now. I am off HU about 4 months now and feeling great. The second venesection lowered my haematocrit to 41,9 from 47. But the platelets reached 880, higher than before the treatment with HU when the higher I reached was 750! I woke them up alright. I should have the venesections before starting the HU!! And what now? Hydroxyurea when I was in 2 capsules a day to lower my haematocrit because the platelets were lowered immediately, caused me gum soreness, extreme fatigue and it messed my immune system and I had 3 consecutive very bad colds in my lungs, I took antibiotics but still lasted a long time. (By the way taking antibiotics with anticoagulants, HU, turned my ears to a brownish colour). And now what? I am waiting for my doctor to tell me the verdict. I proposed a low dose twice a week and see. I cannot take interferon due to thyroiditis. So one drug less to choose. I am on aspirin 80 and plan to take Rutin every other day. I will also start fish oil. So good to share my fears! Thank you! P. S. we are all guinea pigs.

[hunter5582]

It really does pay to go see a MPN expert doc. Many docs, even hematologists, do not have much experience or the requisite knowledge to effectively treat MPNs. They often default to the "standard" protocol and do not have the base of experience to modify treatment to match individual patient profiles. I found a great patient recommended consulting doc on this website mpnforum.com/list-hem/ . I also came off of HU and do phlebotomy only based on the expert doc recommendations. That doc does not sweat the exact number of platelets all that much - looks more a symptoms than numbers. There is some good research to indicate that thrombocytosis alone has no direct correlation with risk of clotting (e.g. 550 - 750 - no real change in risk). Leukocytosis and/or erythrocytosis combined with thrombocytosis is where the greater risk is. I also experienced bothersome side effects from HU. If I ever need chemo cyto-reduction again I will opt for Jakafi or peg-interferon. Hopefully, that won't be needed. Do talk to your doc about the fish oil. Fish oil potentiates the blood-thinning effect of aspirin and is contra-indicated for some people. As for feeling confused, I think that it should just be listed as part of having an MPN. I think we all feel that way lot of the time. That is why it is so good to have this forum to talk to other MPNers. All the best to you.

[Kelly2 in reply to hunter5582]

Could I ask how many platelets you have?

[hunter5582]

Last platelet read 5/21 was 557. Read on 5/2 was 656. d/c HU on 3/22. Last phlebotomy was 5/1. Was doing every 3 weeks and had just moved to every 4; however, now my red blood cell counts are now too low. HCT = 34.8. To top it off - my iron count is way too low. Doc says "we have been over-phlebotomizing you." So for now - no chemo-no phlebotomy and on iron supplements. Also no aspirin. Currently waiting to do surgery for a brain tumor that is hemorrhagic and is surrounded by edema, so my profile is a bit complicated. Talk about confusing! The various docs don't all agree and ultimately it is up to me to sort out the various recommendations and decide what to do. I do a LOT of reading of patient education and professional journals/research to get as much info as possible before making any decisions. It is certainly not always clear what is best. Just have to make the best decisions we can.

[Kelly2 in reply to hunter5582]

Best of luck to you and wish you good results with your surgery. I can see that you are well read. My second phlebotomy was done after 2 months from the first and I had a blood test afterwords. My doctor is a professor and hopefully he knows what he is doing. 🤞🙏Keep us posted. Thank you.

[Kelly2 in reply to Kelly2]

The doctor answered today. I am to continue with daily aspirin (he was not impressed with my Rutin) and send him blood results in a month. It seems he is of the same way of thinking as your doctor and takes no notice of the platelets. So on I go! Could you give more information on fish oils? I thought they were beneficial.

[Uzza]

Hi Kelly2,

Being a newbie I am not familiar with the post you are referring to, but there is this:

"Hydroxyurea, also known as hydroxycarbamide, is a common cytoreductive agent used in MPN. Hydroxyurea is converted to a free radical nitroxide (NO) in vivo and then transported by diffusion into cells where it inhibits DNA synthesis by inactivating ribonucleotide reductase. Although controversial, long-term use of hydroxyurea may potentially promote progression to leukemia [90]. It is possible that long-term exposure to hydroxyurea compounded with chronic inflammation selects for mutated HSC clones that result in leukemia."

From: The Critical Role of Inflammation in the Pathogenesis and Progression of Myeloid Malignancies.

Hope this helps.

Cheers

[Kelly2 in reply to Uzza]

Hi. The post I am referring to was very specific. I don't know if I will find it again unless the person who wrote it reads my post. By inflammation do they mean also lactose and gluten intolerance? This is something I want to check.