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Hesitant on starting Hydrea for ET Jak 2
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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@jville42
It's not podcasts or AI that should guide your decision about treatment.
Listen to your oncologist. Only she or he knows what's best for you.
Sadly, our cancer is so rare that it's way over the heads of many general practitioners. This delays diagnosis for many of us. I'm so glad you have now found an experienced specialist.
ET is not something to ignore. It's what's causing your fatigue, and it puts you at higher risk of blood clots. Being active and healthy is always great, but no matter how much you exercise, you cannot undo the JAK mutation that causes ET.
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5 ReactionsJust some background of possible interest to the question above--Why aren't we all on Besremi?
ET patients are typically in their 60s when diagnosed. Pegasys, the first interferon approved for MPNs often caused intolerable depression in patients over 60. I had a small support group with several patients who tried it but could not tolerate it. A few said the depression did not dissipate even after going off Pegasys, and they were on anti-depressants. In addition, it was expensive and, since not approved for ET, very expensive.
So, Pegaysys was recommended for those under 40, who did not have depressive side effects, used cautiously in those 40-60, and used only in those over 60 if hydroxyurea failed.
Fast-forward to Besremi, second generation interferon: the drug seems better tolerated than Pegasys, and doctors learned better dosing techniques from their patient's experience with Pegasys.
However, Besremi is still not approved for ET, and so is prohibitively expensive for most of us.
As far as I know, hydroxyurea has never been officially approved for ET, either, but because it's a cheap generic that most patients tolerate and has well-known side effects, insurance usually pays for it.
Until Besremi shows superior outcomes than hydroxurea, is approved by the FDA, or goes generic (at least 20 years), my guess is that insurance companies will continue to keep it out of their pharmacopias for ET.
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2 ReactionsI have not yet taken HU, but am hesitant on taking it because of possible negative side effects. My platelets are in the high 500's. Wondering if HU is necessary.
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1 Reaction@ckmrust At first it seemed ok then I started having pain in my neck and shoulders. I mentioned it to my MO and he didn’t say anything. Then the extreme body aches started and then fever and chills. I didn’t know what was happening at first I thought I was just getting the flu. I skipped a dose and was instantly better. I will never touch that stuff again! Good luck and feel free to reach out anytime
@bgerges Oh, my platelets were in the 700-800s but I had an arterial clot a few years ago that they just realized was caused by my ET. Now I am high risk.
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1 Reaction@bgerges
Hope your dr will help you with your decision I’ve taken 500mg daily for over 8 years. Only side effect has been increase in basal cell skin cancers. Learned to be extra careful with sun protection and see derm more often for skin checks
The hydroxy has kept all my numbers good since I started ( I have PV)
Best wishes
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6 Reactions@bgerges my platelets are also in the 500s and I have not started Hydroxyurea yet. I will be getting a second opinion in less than 2 weeks. I am hoping to stay off of it for awhile if I can. I am taking baby aspirin right now
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3 ReactionsHi,
I have ET with Jak2, was prescribed Hydroxyeurea in July, 500mg , I caught Covid three weeks ago which seems to have increased my platlet count, so I went on 1000mg initially, increased to 1500mg from today, I didn't have any symptoms on the 500mg, and tolerated the 1000mg, important to keep up your hydration when your taking hydra.. hope all goes well for you.
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2 ReactionsHi @abquinlan Welcome to Connect. Thank you for sharing your experience with Covid 19 and your increase in platelets. It can be alarming when we see abrupt changes on our labs. But infections, bacterial or viral like Covid-19 can cause high platelets due to inflammation and immune activation during and after the infection.
So it’s a normal response to an illness and happens all the time. When we have a blood condition that requires frequent labs, then we tend to notice these things more. Hopefully by your next set of labs your numbers will have returned to normal so you can go back to the lower dosage of hydroxyurea (HU).
How long ago were you diagnosed with ET?
@loribmt Hi, I was diagnosed with ET at the beginning of the year,
I had ITP nearly 40 years ago, which was treated by removing my spleen, I've had a high platlet count since them. The Haemothologist I attend, decided to test me for the Jak2 mutation late last year, and it was confirmed in March of this year. Not having a spleen seems to complicate things a little.