HYDROXYUREA ET

[patriciapugliese]

Looking for MPN specialist NJ, PA. Just diagnosed with thrombocythemia on 500 mg hydroxyurea for just about 3 wks plus aspirin. Platelets @ 818 potassium high at 6. A lot to digest. How long will it take to bring platelets within normal? Will I ever get my energy back? Should I be frightened at the high potassium and calcium #'s?

[Jennytheb]

Hi, welcome to this site, you will find it amazing. A contributor called hunter listed a worldwide list of MPN specialists recently, hope you can find this. I live at least 3 hours drive away from any in UK and just rely on what I think/hope is a very efficient haematologist. You will find this site very informative. Good luck on your journey.Jenny

[Mazcd Partner MPNVoice]

hello Patricia and welcome to our forum. It can be very daunting when you are newly diagnosed, there is such a lot to try and understand, we have a lot of information on our website that will answer many of your questions mpnvoice.org.uk and of course, the lovely people on this forum will also answer your questions.

Best wishes, Maz

[Solyesh]

Welcome! As others have said - this site is truly amazing. The list of MPN specialists can be found here mpnforum.com/list-hem./ there are quite a few in NJ/PA. Good luck!

[Cja1956]

Hello and welcome to this site. You will find many lovely, supportive people here. I am post Et Mf, having been diagnosed at age 52 with Et Jak 2 in 2008, so I have much experience with this disease. With thrombocythemia, you can live a normal looking span. I’ve been on hydroxyurea and aspirin for many years. I’ve also been on other medications, on and off, with various side effects. You are smart to look for a Mpn specialist right away.

Good luck on your mpn journey.

[CurlyKale]

The hydroxy dose depends an your body weight and how much you want to reduce your platelet level, so its a rough guess to start with. It does have a quick effect. I see my haem every 3 months and any change of dose has had an effect by next visit

[Ashtin]

Hi Patricia,I live in NJ and was diagnosed with PV 10 months ago. According to the MPN specialist lists, strangely there are no specialists in NJ. You will find many in NYC. I went for a consult to an MPN specialist at PennMed in Philadelphia which is about an hour from where I live. Good luck!

[patriciapugliese in reply to Ashtin]

I'm right outside of Philly 30 to 40 min drive can you share the name of the MPN specialist?

[Ashtin in reply to patriciapugliese]

Of course! It is Dr. Elizabeth Hexner. I will be seeing my local hematologist for routine bloodwork and Dr.Hexner yearly or as needed.

[patriciapugliese in reply to Ashtin]

I am trying to get an appointment with Dr Hexner now. Thank you so much for the information. Much appreciated

[Ashtin in reply to patriciapugliese]

You will like her..listened, gave great answers,let me ask a million questions. I did have to wait a few months for an appt but it was worth it. She only sees new patients at 9AM so be prepared to sit in rush hour traffic though coming from Princeton it was only an hour. Keep me posted!

[patriciapugliese in reply to Ashtin]

Thank you! I have an on-line request and will call when I get back from eye doctors. I'll patiently wait a few months to see her!

[Ashtin in reply to patriciapugliese]

I actually found waiting a few months gave me time to get used to having PV and thus amass more questions.

[patriciapugliese in reply to Ashtin]

I got the appointment but not until July Thank You!

[hunter5582]

Here are two lists of MPN Specialists.Worldwide mpnforum.com/list-hem./

USA pvreporter.com/mpn-speciali...

Note that thrombocytosis can cause pseud- hyperkalemia

acutecaretesting.org/en/art....

Hyperkalemia can also be associated.

pubmed.ncbi.nlm.nih.gov/278...

Hypercalcemia can be associated with erythrocytosis. You did not list that as part of your profile.

Definitely follow up with a MPN Specialist ASAP about your concerns.

[nightshadow]

Hi Patriciapugliese,

I was diagnosed January 2021 at age 62 with ET JAK2 and put on the same regimen as you which I suspect is the starting recommendation. Then they need to watch to see how you respond to the medication before increasing or decreasing the dosage.

In my case there was an immediate drop, which then flattened out around the 700 platelet mark. I was put on 1,000mg a day which dropped the platelet level within two weeks to under 400, but I had problems with the medication at that level. Now I am at 500mg/5days and 1000/2days a week, which is a good balance for me.

It took about 9 months to get the proper dosage. I asked the forum how long this process would take after a month or so into it and the responses ranged from 6 months to over a year. So you've just started what is essentially a search for a good balance between medication, platelet levels and other blood cells. Be patient with yourself and your doctors, it may take some time to figure the best course.

In terms of energy levels, it took me several months to get back to something akin to pre ET levels. If I have a bad day I no longer chastise myself for being lazy, but feel free to take a nap and refresh myself or take a 'recuperation' day of little activity.

[Island-Lady]

On the subject of high potassium levels, someone posted here that high potassium level readings are not unusual with high platelets due to an inaccuracy in how the blood is stored for analysis, and that the high number is a false reading. My experience with hydroxyurea has been that it does make me tired and so I have opted to take it less frequently and I am OK with the fact that my numbers are coming down very slowly. Of course my oncologist prefers that I take more but also understands that it is difficult to have low energy and so has agreed to the lower dosage. I was unable to find an MPN Specialist locally, but was able to find an oncology center where several doctors have some experience with et.

I must say that I have learned more from this website than from any doctor, so this is a great place to be.

I wish you the very best😊

[EPguy]

Here is a plot of my PLT results. I started HU 1000/day at the start of this plot, so it took me ~4 months to get in the green. I now take ~500/day, and add some if I start to get numbness in fingers.

Of course each of us may respond differently.

My HCT and other counts followed a similar pattern. The lowest point here was on 1000/day, I felt horrible so the current lower dose with PLT near the top is better for me.

PLT graph

[Michali45]

I was placed on 500mg Hydroxycarbarmide a day when my platelets were over 1500. When they came down quite quickly, low dose aspirin was added and my platelets at last reading were 290. It took about three months to reach this point but Ive been lucky in that I have had no side effects so far and feel quite energetic.

[Beup]

Hi!I was recently diagnosed with ET at age 53 and I am taking 1 baby aspirin daily only(started 3 months ago). I noticed my calcium and potassium were getting higher and higher on my last 3 basic metabolic panel tests. My calcium was now at 10.5 and my primary doctor ordered an ionized calcium test. It came out normal. She also did a thyroid PTH test which was normal since high calcium can be linked to thyroid issues. She also did a basic metabolic panel and my potassium is now at 5.6 (5.1 two months ago)and she is having me retest in 3 days. She said it is dangerous to have it high. I did some research and aspirin use can increase potassium levels. My doctor agreed and did mention diet as well. I don’t eat a high potassium or calcium food diet. I have been reading food labels closely. I am going to speak to my hematologist about recent potassium issue. He did not think the calcium was related to aspirin or ET. I was surprised to learn that regular coffee has over 100mg of potassium and decaf over 200 mg, cutting back haha. I am trying to sort this out too. Good luck to you with your treatment.

[patriciapugliese]

with my potassium level at 6 I went to see a cardiologist, he took me off lisinopril. I'll let you know if it helped or hurt.

[Beup in reply to patriciapugliese]

Update: My retest of potassium 4 days later was 5.0 or high normal range. The phlebotomist told me to “not” make a fist. I read that it can increase potassium levels. Before retest I took a babier baby aspirin of 40.5 mg every other day. I still take smaller portions of high potassium foods.

[Beup]

I hope it works! I will keep you posted too if I learn anything new. Thanks for update!

[Beup]

Hunter’s post informative.