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Hesitant on starting Hydrea for ET Jak 2

Posted by bgerges @bgerges, Aug 3 11:51am

I am a 73 year old female, diagnosed with ET, with Jak 2 mutation. The highest my platelet count has been was in the mid 600's and was just tested again today at High 500's. As of now I am on 2 baby asprins a day, but my Oncologist has been recommended me starting Hydrea since I was diagnosed 2 years ago. I am hesitant about starting Hydrea because I have no ET symptoms, worried about the side effects of Hydrea and the fact that my platelet count has not been climbing. My WBC and RBC are on the high side of normal and I am also concerned they will be negatively effected. What did other oncologists order when their patient's platelets were in the high 500's? Interested in hearing comments.

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janemc | @janemc | Aug 21 11:04am
In reply to @kapow "@janemc I have the same driver (MPL) and am on 1000 mg of Hydroxyurea 7 days..." + (show)
Profile picture for kapow @kapow

@janemc I have the same driver (MPL) and am on 1000 mg of Hydroxyurea 7 days a week.. my platelets have been on the rise again since January and are currently at 793 . I am waiting to hear from my hematologist about what more we can do. I am getting quite concerned.

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@kapow

It took more than two years to slowly increase to a dosage that stopped my count from rising.

I got very discouraged during those two years.

But, because my oncologist increased my HU slowly and carefully, I have no serious side effects.

So it was worth the wait. And now for a year I've had a platelet count just over the normal limit.

May you get there soon!

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csrb7007 | @csrb7007 | Aug 22 5:43am
In reply to @marykatherine62 "@conniemarie I was on 1000mg daily for PV. My labs dropped weekly. I also developed side..." + (show)
Profile picture for marykatherine62 @marykatherine62

@conniemarie

I was on 1000mg daily for PV. My labs dropped weekly. I also developed side effects, severe itching, especially when I laid down, headaches, brain fog was worse, bloody nose, mouth sores, was very fatigued. I was miserable. Weekly MD lowered my dose weekly ,not because of my symptoms but my labs continued to drop until they were at alert level low. That's when hydrea was discontinued. That was the end of January. It took until June for my labs to return to normal levels. In July my labs hit treatment levels. I have a new MD who thankfully started me on Jakafi. I just started it yesterday and hopefully I will have the good response others have experienced. I'm not knowledgeable about ET but have experience with hydrea. Im not trying to scare you, you may not have the same experience and be able to tolerate a higher dose. If you do the higher dose just pay attention to your symptoms and work with your MD. Good luck and best wishes.

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@marykatherine62 any discussion of starting Besremi?

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marykatherine62 | @marykatherine62 | Aug 22 7:29am

No - just started Jakafi the 20th.

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Sandy Morris | @esperanzam | Aug 22 1:34pm
In reply to @csrb7007 "I just had a BMB 3-4 months ago and the lab report stated I had a..." + (show)
Profile picture for csrb7007 @csrb7007

I just had a BMB 3-4 months ago and the lab report stated I had a JAK2 mutation which led the Dr to conclude I had ET. But 2 weeks later, my labs were reevaluated and came back saying I had PV. Just went to UVA Oncology and the blood cancer specialist recommended bypassing the hydroxyurea, starting Besremi, because hydroxyurea only treats the symptoms. Besremi targets the JAK2 mutations. So much so that some PV & ET patients go into remission.

Surely something to consider.

Best of luck.

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@csrb7007
Very interesting information. I will talk to my Oncologist about this.

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Sandy Morris | @esperanzam | Aug 22 1:58pm
In reply to @scienceteacher "I am 71 and have been on HU since the first of November. I have no..." + (show)
Profile picture for scienceteacher @scienceteacher

I am 71 and have been on HU since the first of November. I have no side effects that I can detect. There is some reduction in RBCs but I don't seem to have any effects from that either.
I started on one 500mg capsule per day and now take one three times a week. My platelet count was 404 at the last test.
I know some oncologists push for lower levels but since the count is within the normal range my doctor wants to avoid any side effects and/or reduction in RBC count.
Don't be afraid of the HU. If you tolerate it well it won't interfere with your normal life activities.

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@scienceteacher
I have been on 1,000 mg of Hydroxyurea a day for 11 years. I have had little if any side effects. Hard to identify when you have so many other issues. But overall, it has worked. If I take less, my platelets escalate way too much. I have also discovered that steroids (like injections for my pain before I had my back surgery and my two hip replacements over a 6 year period, or a steroid pack for a sinus infection... ) make your platelet count go up. A PA told me a few years ago the they treat patients that have THROMBOCYTOPENIA, which is the opposite of THROMBOCYTHEMIA, by giving them steroids to increase their count!
My platelets on a good month stay at 500,000 and the doctors have said for me that is good.
So, long term HU seems to work. The other two options are much more expensive and I have sought patients opinions about
anagrelide (Agrylin). Several reported problems or adverse effects. Only once when they thought my leg pain might mean the ET had morphed into MEYLOFIBROSIS did they think I might should get the anagrelide but my drug plan did not want to cover it. I also saw several having problems with it, more than I was having with the HU. Interferon alfa (Intron A) is the other treatment they sometimes suggest and lastly,
Apheresis
Healthcare providers use apheresis to obtain or remove specific parts of blood to treat a wide range of conditions. In apheresis, a centrifuge machine removes blood from your body. You may participate in apheresis so you can donate blood elements to help others. But apheresis may also treat certain medical conditions by removing blood elements. They take the platelets out and return your blood but it is not a one time treatment.
So, I will stick to HYDROXYUREA as long as it works. So far it has worked for me.

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