When to take hydroxyurea

[OrangeCatMom]

I’m a 71-yr old female whose platelets have been elevated for 7+ years. They bounced around 400-450 for years, then went up to 450-500 in 2022-2023. A biopsy in Jan 2024 confirmed JAK2 mutation. My platelets moved as high as 550 in mid-2024 but are now down to 470-490.

I have been advised to take hydroxyurea and aspirin. Thus far I have deferred taking the chemo drug for various reasons, (1) the effect on WBC and overall immune functioning (2) my elevated cancer risks due to PMS2 Lynch Syndrome and family history of breast cancer (3) risk of unpleasant side effects.

I feel great right now. I have no symptoms of ET. I get lots of exercise, I eat reasonably well, I'm not overweight, I do not smoke, I don’t have diabetes, no prior history of thrombosis, no known cardiovascular risks. I don’t want to ruin a good thing by taking a toxin.

My hematologist recently said ET and other MPN's cause abnormal (immature) blood cells, which are inflammatory, and which hydroxyurea can impact for the better, even at <600. She sent me some links to be extra convincing (but unfortunately these studies are all over my head).

ashpublications.org/blood/a...

pubmed.ncbi.nlm.nih.gov/214...

pubmed.ncbi.nlm.nih.gov/217...

When I consulted with a different hematology specialist back in October, he thought deferring was a reasonable choice given that my platelet count is already in the 400-600 range w/o treatment.

I know hydroxyurea is inevitable at some point, but I’d prefer to wait until my platelets are over 600. No one can tell me my personalized risk of thrombosis with platelets between 450-600. Any thoughts?

[hunter5582]

Hello and welcome. You are correct that you have a variety of options beyond starting on hydroxyurea. Going on HU is not inevitable. There are other options. Pegasys is also recognized as a preferred treatment option in the NCCN Guidelines. Anagrelide is a second-line treatment option but can be more toxic than HU.

As the other hematologist suggests, continuing on aspirin only is an option. Not all MPN Specialists use age > 60 as a factor in determining when to start cytoreduction, though it is the standard protocol. Some take a more individualized approach since we do not all age in the same way. My MPN-doc told me "65 is the new 35." I like that doc!

The more accurate way to look at this is to ask do the benefits of cytoreduction justify the intrinsic risks? If the answer is yes, then what is the best choice for cytoreduction? There are two preferred treatment options, HU and Pegasys (or Besremi). (Note that Pegasys is currently in short supply but will hopefully be available in the second half of 2025).

If you have not already consulted with a MPN Specialist, suggest that you do so before making a decision. Most doctors, including many hematologists, have little experience with MPNs due to how rare they are. Here is a list mpnforum.com/tsr-the-list/ .

If you have not already reviewed the NCCN Guidelines, they are worth reviewing. nccn.org/patients/guideline...

Wishing you all the best.

[OrangeCatMom in reply to hunter5582]

Thanks for all the information, hunter5582. The list of MPN specialists is very helpful. Two of the recommended specialists are in the same hematology practice as my current hematologist. Maybe a change in "bedside manner" and/or information delivery would be helpful for me down the road. Thanks also for the NCCN Guidelines. ET is such a confusing problem for me to sort out.

[Purplelady2 in reply to hunter5582]

Looking at this list of specialists is there only one in England (Birmingham)? We live in London.

[RoundTheWorld in reply to Purplelady2]

As well as the one shown under England there are more listed as UK in the link.

[ETket in reply to Purplelady2]

Guy's Hospital in London has a very good MPN specialist team.

[Amethist]

Well done for keeping yourself so fit and healthy. Glad to hear your are symptom free too. I would have the same questions and doubts that you have. Your platelet are quite close to “normal” range, so at what level would they be happy with, when using HU? It wasn’t so long ago that the upper acceptable range for platelets was 600. How do they think it will improve your life?

Has your haematologist been completely open and honest about all the possible side effects from HU? Mine wasn’t. Check them out on Drugs.com - professional version. Also many people on here mention side effects they have had so that gives you some idea.

I do wish everyone would fill in a vaers / yellow card for all side effects from medical products as they are grossly under-reported ( at best 10%, at worst 1% are reported) . That really doesn’t help people make proper informed choices.

If you are not ready to take a med, then don’t . You can always change your mind when you are comfortable with ‘your’ decision.

If your haematologist continues to use scaremongering tactics, then perhaps it’s time to find another one.

I have also personally declined HU. Platelets typically around 1400+/-. Just on aspirin every 3rd day which suits me very well.

All the best.

[OrangeCatMom in reply to Amethist]

Thanks for your response, Amethist. It's nice to know other people are wary of taking hydroxyurea before it is necessary. I wish I knew my actual risk of thrombosis. Meanwhile, I'm just guessing, but I assume it is on the lower end of the curve. I also have normal blood work (other than the platelets), and my JAK2 V617F allele burden is 8%. Hopefully, aspirin will good enough for now.

[Amethist in reply to OrangeCatMom]

Taking any medication is always a very personal choice and only you can make the final decision . Medicine has never been and never will be an exact science, with regards to both diagnosis and treatment . I never like to be grouped into one ‘box’ where I am told I must do this or that. With thrombosis risk, please do remember that the vast majority of people who suffer these don’t have ET, elevated platelets etc. there is far more going on than just platelets.

Avoiding processed foods, especially sugar are important for everybody. Too many processed carbs and vegetable/ seed oils aren’t good either. Be careful what products you put on your skin as it absorbs everything. Also what you drink as even tap water has lots of chemicals- known and unknown.

Get out in the sunshine, laugh a lot, enjoy nature and friendships.

My haematologist used to cause me stress. Just seeing him would annoy me, so I have removed him from my life. If I ever feel ill in the future , I will arrange to see a dr of my choosing. What I did quickly realise at the time of my initial Dx was that I was seriously deficient in some vitamins that they can test, (who knows about the vast majority of what they don’t test.) Correcting the obvious ones ( my self) were life changing and health transforming.

When Drs know nothing about vitamins and minerals , then I doubt their ability to heal anything.

Stay happy, healthy and enjoy life.

Xx

[OrangeCatMom in reply to Amethist]

Thanks again for your thoughts. I agree with you about the food we eat, and the many toxins (and microplastics) that we deal with in today's world. I also agree about vitamins and the value of testing for as many things as possible to rule them in or out. My husband had some serious complications from a B12 deficiency. I regularly get tested for vitamin deficiencies as part of my naturopath visits. She specializes in Parkinson's Disease, which is another condition I unfortunately have. I try to follow her advice about exercise, diet and vitamin supplements and, so far (7 years in), I have done very well (still stage one). There is a lot you can do by taking care of your health.

[Amethist in reply to OrangeCatMom]

Sounds like you have covered everything possible. 👍

B12 deficiency is horrid, I had loads of symptoms from this, thankfully I caught this early enough to reverse them.

I generally rate all Drs on their knowledge of B12. Most fail dismally , hence I can’t trust anything else they say either.

All the best !

[RazB]

Hi, mpnvoice.org.uk is a truly fantastic place to find all up to date info on MPNs. Find a 2nd opinion, and gather as much information as possible - you are right about not wanting to add in a toxin unless you really need to. The website above has lots and lots of info in a very readable and understandable format. X

[OrangeCatMom in reply to RazB]

Thanks for suggesting mpnvoice.org.uk. I got to watch someone inject themselves with interferon! 😀 There will be lots to learn there.

[LaalRobbo]

Hello, I am 63, female, taking aspirin and my platelets hover around 600 and have for the last 3 years, my haemo wanted me to go on hydroxy at 60 but i held off. Like you i am quite fit, don't smoke, eat well and suffer few side effects and I am holding off as long as I can and I too recognise I will have to take it at some point. My haemo is happy at present for me to do this as I am stable. Don't be pushed into anything x

[OrangeCatMom in reply to LaalRobbo]

Thanks for your support. Wow, I hope my platelets stay below 600 for three more years without cytoreductive therapy. Good for you.

[PHGR]

Since you people here have been taking Hydroxurea, I just read that it should be taken wearing gloves. Why is that? The doctor didn't mention anything about it..

[Innessant]

Hxydroxy and aspirin are the official first lines of medicine after phlebotomies.I would like to point out that HU works really well and has done for decades in most people.People that are happy with a drug tend to stay quiet. All medicine is potentially "toxic" it is just a matter of dosage. Your choice ,your body.

[OrangeCatMom in reply to Innessant]

Good point about HU working very well for most people. I hope I will tolerate it well when I eventually take it (at the lowest dose possible). For me, the question is when to take it. I will continue to educate myself, but right now I can't see the benefit of pushing my platelets down from 490 to 450. The only study my Hemo cited when prescribing HU was the Cortelazzo et al, N Engl J Med, 1995. I was surprised a thirty-year-old study was still the gold standard. Their goal of maintaining platelet counts below 600 was chosen because a previous study showed that patients with counts below that level had a relatively low rate of thrombotic complications. Perhaps not true any longer... to be determined. Thanks for your thoughts!

[Innessant]

I would not get obsessed over the blood count numbers if you are generally in good health ,living healthily and mindful of that.