Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on hydroxyurea and I am a little nervous about it. He expressed that interferon is an option down the line but wanted to start here because he wants the counts to come down quicker.
Can anyone share their experiences with hydroxyurea and especially CALR ET?
I am concerned because I live so much of my life in the sun the skin cancer aspect of it is a non starter for me. Plus I am concerned about other external effects like sweating around my kids playing with them or being with my wife, etc. How careful do we have to be?
Bummed.
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dbus1417
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So I’m ET+CALR and I have taken both. I was on a high does of Hydrea but after 5 years I grew a tolerance to it. If I was in the sun too long or didn’t cover up enough I would get dizzy and experience fatigue. The long term side effects made me nervous as well. Which is why I switched to interferon. I just took my 7th dose yesterday and so far my biggest hurdle is fatigue. My (new)MPN Specialist says his preferred line of defense is Pegasys Interferon. I’m only 38 (and as mom as well) so the thought of being on Hydroxurea the rest of my life was daunting. There is a new medication (hopefully coming out in the next year) for ET+CALR patients so keep checking back here for updates. Wishing you all the best!
thank you. Were you able to control your counts with hydrea? He wants to start me at 2x 500 daily for the first month to knock my counts down
Also, what precautions did you have to take for things like swimming (other than sun exposure)? Intimacy? I have read that this stuff is excreted through sweat and other bodily fluids 🫤
When I was first diagnosed I think I took 2 pills (500mg X 2) a day and that got my platelets out of the millions right away. Up until recently I was taking 3 sometimes 4 pills a day to control my count, depending on what my Hematologist recommended. It felt like we were adjusting a lot but eventually I made the decision to switch to Pegasys and got an MPN Specialist. With the Hydrea I made sure to where sunblock, favor the shade and stay well hydrated (not easy living in California). Dizziness was an issue for me if I was dehydrated at all or exposed to the sun too long. But everyone’s experience and body is different. Otherwise I tolerated it pretty well.
You will hear a range of experiences with hydroxyurea. Some tolerate and benefit from it. Others do not. HU does tend to reduce thrombocytosis more rapidly than Pegasys for most people. Staring on HU for rapid PLT reduction then switching to PEG before the long-term risks associated with HU accrue is a viable option for many people.
I previously tolerated HU, but in my last treatment episode with it I was no longer able to tolerate it. I experienced toxicity even at low doses. I was also refractory to it at the doses I took. Control of PLT was Okay but it did not control the erythrocytosis. I went off HU for a while then switched to PEG. My platelets had been cycling between the 700s to 900s. It took about 8 weeks on 45 mcg PEG to reduce PLT by 300K. PEG was very effective for me and much easier to tolerate. (Note - I have JAK2+ PV with erythrocytosis and thrombocytosis).
You are correct that you need to be very careful about sun exposure when on HU due to risk of skin cancers. Sun screen is a must. Covering skin is a good idea. Fortunately, there is excellent lightweight clothing with SPF protection (see your local fishing supply store/catalogue).
It is true that some HU does pass into bodily fluids. This does not appear to be an issue with sweat or tears. It is recommended that a condom be used when someone is on HU since it does pass into semen and vaginal secretions. Not all docs make this recommendation. The risk is likely fairly low. There are also special handling instructions. If anyone other than you handles the bottle or the meds, they should wear gloves. You should be sure to wash your hands well after handling the HU. Here is some information about HU that you may find helpful.
I don’t have any personal experience of any of the strong meds frequently taken for ET, but that’s because I chose not to take what my haematologist recommended. That is always an option too.
I have ET jak2.+ Last checked my platelets were around 1500+/- ( pretty much been like this since diagnosis in 2016) and I just take ½ a regular aspirin every 3rd day. ( which I checked with an MPN specialist and she thought it was a great solution . I had disagreed with my haematologist so went for a second opinion with a specialist )
I also read lots of scientific papers on the value of lowering platelets, which were very interesting and informative and showed my haem was not up to date at all. I also checked out all the possible side effects of HU on drugs.com ( I always look at the professional list) so I knew my haem was grossly underplaying all the side effects ( or he didn’t know) and therefore I decided not to take HU.
You can always ask for extra time to make a decision. Lots of interesting papers on pubmed so do your own research. You should never feel pressured into taking a medication. The doctors are there to advise you but you always get the final say. Only agree when you are totally comfortable with your decision.
I was on HU for about 6 months at the beginning of my cytoreductive journey. It did knock my platelets down from a high of 1.4M to about 650 in that time (interestingly it had a smaller effect on my WBCs). My MPN specialist gave me a full on briefing before starting on HU. He emphasized the sun exposure (live in desert) and the need for a high SPF and covering up as much as possible. He said condoms were absolutely necessary and that I should make sure to close the toilet cover to flush after use. He did not mention sweat and tears.
After 6 months I switched to Peg as I became intolerant to HU (hives; discoloration of nails; rapid heartbeat). The Peg has been a journey but glad to be on it. Peg can take a while to reduce platelets but it is the only drug, today in use for ET, that holds the possibility of reducing the allele burden and perhaps arresting or reversing disease course. I wanted to be on Peg from beginning as I also did not want to be on HU for decades, but went the HU course as that was what was being recommended by the MPN specialist at the time.
Perhaps you can ask if there is a combination that might work. Maybe 500mg a day of HU and start Peg and then once your platelets get into a more comfortable range, you can wean off HU. When I made the switch, I was on both drugs for about a month.
Good Luck!
Yes l have experience with hydroxy,when it was working for me it was very very good. I took it from October 2020 when l was first diagnosed with ET, to October 2022. Side effects:acute stress,imbalances for example inflamation throughout body,skin darkening so sunshine a major threat.Chronic savage insomnia,fatigue,infections,weight gain, tinnitus. Hydroxy and age failure to control hematocrit, white blood cell counts high symptoms of inflamation and underlying fungus infection. Feeling body was slowly being poisoned . It has to be said however that many of these symptoms are linked to myelo-neo plasm MPNS. Adiewon
Hi, I started on HU 2X500/day when my ET switched to PV my platelets were about 560 when I started HU and after about 3 weeks they were in the 300's. After about 4 months all my other blood counts were WNL. I guess I am one of the lucky ones who can tolerate HU, at least so far. My platelets currently run about 250, I have CBC's monthly. I currently take 9 HU/week. Good luck to you on your treatment. I did have one basal cell removed but it was there before I started the HU, it did get larger which is why it was removed, it did not look like a typical basal cell. Best
Hi, when I first started I took one in the morning and one at evening. It was such a pain to remember to take the evening one that I started taking them both at the same time. I was told it did not matter. It seemed to me that the results moved faster when taking them both at the same time, maybe that was just my imagination. The pills have never bothered me, maybe I am just lucky in that regard, at least so far. There are no dumb questions by anyone. Best.
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