New to Hydrea for ET

Posted by mfeley @mfeley, Feb 22, 2025

I am a 73 year old very active woman who was recently diagnosed with Essential Thrombocythemia by having a high blood platelet in a CBC and then a bone marrow biopsy that confirmed the diagnosis with a CALr gene. I have no symptoms and am on no medications for anything else except for a yearly infusion of Reclast for the old bones. I run most days of the week and work out at the gym.
My oncologist hematologist says I will start on 500mg of Hydrea when I get back from my monthlong trip to sunny Costa Rica. Right now I’m just taking a baby aspirin. I’m not so afraid of the cancer as I am the treatment. I can overcome a lot of things but one I can’t is the fear of losing my hair. I’m just going to say this is all about vanity. I haven’t read much on this forum about this possible side effect. I’m looking for reassurance that this is a rare occurrence. I hope you can help. Thank you.

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Jennifer | @williamsjen | Jun 18, 2025

In reply to @tamlyn74 "My platelets were high in 2015 and I was basically dismissed by hem/onc I saw at..." + (show)

The same thing happen to be my levels were always low, when I saw it went from 324 to 600 in a year i asked the Dr. and she said she was worried about it to wait until next year. Good I went back and had my blood work done the following year because it had went up to the 700s. I had taken the covid vaccination and had shingles all in one year then the high platelets. They are back in the 200s hopefully she reduces my mg when in go back and pray the numbers stay down. I heard the go up and down.

Jennifer | @williamsjen | Jun 18, 2025

Glad to hear you say that, it is about vanity. I was afraid of losing my hair as well. I haven't loss any hair and to be honest my hair has grown longer. I do use organic hair products as well. I have talked with several people taking HU and they have not loss hair. My oncologist said that it doesn't cause hair loss. Another issue I have notice is skin discoloration I don't like that part of it either but, this could all be worse. If I start to lose hair , she would have to put me on another medicine. Just thankful that my platelets are down to the 200s and I feel good.

littlechickadee | @littlechickadee | Jun 18, 2025

In reply to @williamsjen "Hello, sorry to hear that HU did not work. i heard it had the least amount..." + (show)

Thank you @ williamsjen.

leene808 | @leene808 | Jun 18, 2025

In reply to @mw2023 "Your transition from ET to PV--was that new diagnosis from symptoms, blood tests or bone marrow..." + (show)

Aloha MW2023.. yes. found you!. I had a trend of increased WBC, HCT and within a month's time. So the increase was very slight, but new. I was diagnosed with ET in 1992.. so 33 years ago. I have been on HU mostly since then and I take an occasional ASA. (twice a week). My doctor does not talk to me so when I asked if I was transitioning to PV he said "no" but why would he recommend Besremi when its not approved for E.T. but for PV right now? I am currently looking for another hematologist that will spend more than 2 minutes with me. The amount of time I was on HU seemed like most of my life, and it works well for me, and one point my Doctor said I was "sensative" to it. We tried it more that once a day and I had too many symptoms. My platelets stay below 500 on one pill a day. If I go off the HU my platelets shoot up to 800 or 900 and I have symptoms. (TIAs, Headaches) My advise is to pin down your doctor and ask if transitioning to PV is normal for an ET patient. I had another blood test two days ago and all my counts went back down, including my HCT. So its the TREND that they are looking at to determine next steps. I wish my doctor would have discussed this more with me as well. It seems they only look at the numbers, and not the patient sometimes. What is the Hormone test they are doing? My doctor did not say anything about doing that. Thanks and good luck.. remember you are the patient and we both need to ask more questions as they run out of the room! Leene

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mmwagner46 | @mmwagner46 | Jun 19, 2025

In reply to @williamsjen "Glad to hear you say that, it is about vanity. I was afraid of losing my..." + (show)

What is HU?

leene808 | @leene808 | Jun 19, 2025

In reply to @mmwagner46 "What is HU?" + (show)

Hydroxyurea. or Hydrea which is a chemo medication you take orally. Very old medication, but seems to work for Myeloproliferative disorders like E.T, and Leukemia.

ebertolis | @ebertolis | 3 days ago

In reply to @1pearl "Hi all, Honestly, I have not taken any Hydrea although it was prescribed for me on..." + (show)

@1pearl
Hi,
I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red cells in excess. This was diagnosed in January, ans doctor prescribed me Hydrea. But after having read the notice of this drug, I decided not to take it. I am registered in a French forum (I'm living in France) and I found a gentlemen with the same desease who had many health problems after having taken hydrea, (3 years of hospital), and after that he haven' taken any drug and he is living with high platelet number (1 200 000) since ten years, and no problem. He says you need to eat garlic and curcuma and cinnamon every day and make physical activity and all is OK.

janemc | @janemc | 3 days ago

In reply to @ebertolis "@1pearl Hi, I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red..." + (show)

@ebertolis

Bonjour, ebertolis! Staying active is a great idea.

It is true, some people have difficulties with HU (hydrea). But thousands of us with MPNs, as well as many, many more with sickle cell disorder, are glad to take HU.

With blood cancers, for reasons nobody understands, a mutation occurs in the process that produces blood cells. No study has shown that any food or supplement can undo that mutation.

For me, HU has brought down my platelet count, and greatly relieved the crippling side headaches and fatigue of ET. It also protects my bone marrow, reducing the possibility of progressing to leukemia.

I am grateful every single day for this effective, inexpensive drug.

Each of us experiences ET (and HU) differently.

You must make the decision that's best for YOU.

Wishing you well!

1pearl | @1pearl | 3 days ago

In reply to @ebertolis "@1pearl Hi, I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red..." + (show)

Hi @ebertolis ,
It is nice to meet you. For me with CALR 1 mutation and high platelets but no symptoms after one year of being diagnosed first in January 2025 with ET which got changed by same Hematologist/oncologist to Primary Myelofibrosis in February 2025, I still choose to take only low dose daily aspirin and no Hydrea which I have never taken. I do check my BP at home every weekday and it is normal, eat healthy food , am a good weight which has been the same for 35 years, exercise daily, and keep myself extremely busy with a positive attitude. I do believe doctors do not know much about what I might have so really do not know exactly what to do about it. Just as @janc posted, each person has a different situation and needs to do what they feel is best for themselves.
On a side note, my family is traveling to France and Italy this summer and I am really looking forward to it!

janemc | @janemc | 2 days ago

In reply to @1pearl "Hi @ebertolis , It is nice to meet you. For me with CALR 1 mutation and..." + (show)