1. < Blood Cancers & Disorders

New to Hydrea for ET

Posted by mfeley @mfeley, Feb 22 5:24pm

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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mfeley | @mfeley | Feb 23 12:29pm
In reply to @nypara66 "Yes I am two years in with PV and am 58 so slathering on sunscreen and..." + (show)
@nypara66

Yes I am two years in with PV and am 58 so slathering on sunscreen and wearing a hat has been life changing. You can feel your skin burning and stinging otherwise. I miss my tan.

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I tan more than ever in my old age and do like some color. Sounds like the medication forces one to do that. Thanks for sharing that.

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albertedward | @albertedward | Feb 24 10:24am

I lost alot of hair with hydroxyurea when I first started taking it.Then it slowed down and on Jakifi after 2 years of hydroxyurea. It stopped working for me so now on Jakifi and hope that's the final drug.Good luck to all of you and God bless !

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smyles73 | @smyles73 | Feb 24 10:49am
In reply to @stickball1 "I’ve been on HU after being diagnosed with ET as a result of JAK-2 mutation shortly..." + (show)
@stickball1

I’ve been on HU after being diagnosed with ET as a result of JAK-2 mutation shortly after my 87th birthday. It’s been almost a year and my platelets are dead normal after a dosage of 500mg per day for about 3 months. I’m now only taking HU 4 times a week. I’ve not exhibited any side effects except for a possible increase in Squamous Cell activity. Not sure if it’s related to the HU, as I’ve had issues with skin cancers in the past. Just my days in the sun catching up with me. I was a beach bum in my past life. Having the right Hemo/Onc is a blessing. I’ve got one here in South Florida. Extremely conservative approach to my ET problem, easy to speak with, and compassionate. Live your life to the fullest and don’t worry about your hair. It a small price to pay for a productive life.

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I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

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5 replies
mfeley | @mfeley | Feb 24 11:13am
In reply to @stickball1 "I’ve been on HU after being diagnosed with ET as a result of JAK-2 mutation shortly..." + (show)
@stickball1

I’ve been on HU after being diagnosed with ET as a result of JAK-2 mutation shortly after my 87th birthday. It’s been almost a year and my platelets are dead normal after a dosage of 500mg per day for about 3 months. I’m now only taking HU 4 times a week. I’ve not exhibited any side effects except for a possible increase in Squamous Cell activity. Not sure if it’s related to the HU, as I’ve had issues with skin cancers in the past. Just my days in the sun catching up with me. I was a beach bum in my past life. Having the right Hemo/Onc is a blessing. I’ve got one here in South Florida. Extremely conservative approach to my ET problem, easy to speak with, and compassionate. Live your life to the fullest and don’t worry about your hair. It a small price to pay for a productive life.

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Thanks for the encouragement.

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drbart86 | @drbart86 | Feb 24 11:25am

HU works well in most cases it kept my ET (CALR) under control for 5 years (ended up with max dose 1 g 2x/d), until I had issues (wt loss, all blood counts out of control . . .). Now on Jakafi for 2 years at 10 mg 2x/d. So for no problems (platelets elevated but not other symptoms to really cause concern).

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1 reply
janemc | @janemc | Feb 24 4:13pm
In reply to @smyles73 "I’m only 51 and I have been taking HU for Bout 3 years now and my..." + (show)
@smyles73

I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

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I'd say it's time for a discussion with your oncologist.

Have you seen any reduction in your platelets over time?

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albertedward | @albertedward | Feb 24 10:35pm
In reply to @smyles73 "I’m only 51 and I have been taking HU for Bout 3 years now and my..." + (show)
@smyles73

I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

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The same happened to me but ok for now on jakifi.I am 75 and hate to see someone like you at 51 with problems.Hopefully they will find a cure one day.Stay strong you are not doing anything wrong.keep on your Doc.

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eileen11108 | @eileen11108 | Feb 25 6:16am
In reply to @smyles73 "I’m only 51 and I have been taking HU for Bout 3 years now and my..." + (show)
@smyles73

I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

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I suggest you get a consult with an MPN specialist.
It does seem like a pretty high dose of HU.
Best wishes, Eileen

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stickball1 | @stickball1 | Feb 25 9:49am
In reply to @smyles73 "I’m only 51 and I have been taking HU for Bout 3 years now and my..." + (show)
@smyles73

I’m only 51 and I have been taking HU for Bout 3 years now and my dosage is crazy M, W,F 1000mg and T,T,S,S 1500mg. My platelets are still Very High.diagnosed with ET and Jake2 Mutation! What am I doing wrong?

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That’s a lot of HU you’re taking. How high is your platelet count? Are you exhibiting any side effects at your current dosage? Have you had any bone marrow tests to rule out other issues? At your current dosage that you indicate you’ve been on for three years, you should be seeing some positive results. What does your Hemo/Onc say??

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1995victoria | @1995victoria | Feb 26 1:06pm

I didn't lose my hair. I've been on HU (2 caps/day) + baby aspirin since 2021, only side effect in year one was gut issue. I'm more afraid of stroke or heart attack, than HU and ET. I never had any symptoms, just elevated platelets....I was a little frozen when I first heard cancer, but I know people who have had lot worse cancers and other conditions. All the best, I hope your journey down this road is as easy as mine has been.

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