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 | Mar 7 11:45am
In reply to @loribmt "Life in the northwoods takes on a truly unique flavor, doesn’t it? I also feel that..." + (show)
@loribmt

Life in the northwoods takes on a truly unique flavor, doesn’t it? I also feel that nature is healing. So it’s no wonder it’s been my happy place for many years. Yours too, I’m sure! The serenity of the forest grounds me.

The old Marty’s was a favorite haunt. We haven’t been there since the new ownership took over. Bummed to hear the relish tray is a thing of the past. Can’t be a classic Supper Club without the relish tray! 😅

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There’s not too many places left with the salad bar, darn it! The Ding a Ling might still have one in Manitowish.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @jeant1948 "I have been on Hydrea for 2 1/2 years. Platelets were 1100 now down to 465..." + (show)
@jeant1948

I have been on Hydrea for 2 1/2 years. Platelets were 1100 now down to 465 where my doc is happy. I take 1000mg every day and yes my hair is thinning. I'm 76 years old so don't know if it's the drug or old age. I'm also interested in what others have to say about it too. Thanks for sharing

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@jeant1948, some people have reported hair loss with Hydrea treatment. It may also be related to age. There are medications you can take to help with the hair loss, but you would want to clear it with your hematologist first.

I'm glad that your platelet levels are improving. How are you feeling?

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2 replies
drawlings0803 | @drawlings0803 | 3 days ago

Hi there! I’m 70 years old & just had a bone marrow biopsy yesterday for thrombocytosis. I have been on Hydrea for a little over a month now, & haven’t even noticed my hair thinning.
I had breast cancer 17 years ago & did lose my hair with those treatments. It was devastating, I’ll be honest. But - I found a cute little blond wig & it made all the difference.
I wouldn’t worry about losing your hair with Hydrea. Good luck!

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et1055 | @et1055 | 2 days ago
In reply to @colleenyoung "@jeant1948, some people have reported hair loss with Hydrea treatment. It may also be related to..." + (show)
@colleenyoung

@jeant1948, some people have reported hair loss with Hydrea treatment. It may also be related to age. There are medications you can take to help with the hair loss, but you would want to clear it with your hematologist first.

I'm glad that your platelet levels are improving. How are you feeling?

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What are the medications for hair loss?
Mine is getting pretty thin.
I have been on HU for 8 months.

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1 reply
kapow | @kapow | 1 day ago
In reply to @et1055 "What are the medications for hair loss? Mine is getting pretty thin. I have been on..." + (show)
@et1055

What are the medications for hair loss?
Mine is getting pretty thin.
I have been on HU for 8 months.

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Mine too!

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hudson2019 | @hudson2019 | 1 day ago

Hi I Have been on Hydrea for 14months now No signs Hair Loss so Far.

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jacklyn | @jacklyn | 1 day ago

Hi there. I took hydroxy 500mg twice a day for several
Months then 500mg for another few months. Never lost my hair and no side effects. I am 76.

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1 reply
jeant1948 | @jeant1948 | 23 hours ago
In reply to @colleenyoung "@jeant1948, some people have reported hair loss with Hydrea treatment. It may also be related to..." + (show)
@colleenyoung

@jeant1948, some people have reported hair loss with Hydrea treatment. It may also be related to age. There are medications you can take to help with the hair loss, but you would want to clear it with your hematologist first.

I'm glad that your platelet levels are improving. How are you feeling?

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I feel great. Just the hair loss problem. My hematologist acted like he had never heard of hair loss before and had no suggestions. Thanks for your reply.

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ldz | @ldz | 21 hours ago

I am 76 and have been on Hydrea since May 2023. I found that I was losing hair which seemed like a lot. I started using Rosemary Shampoo and Conditioner. I also have boiled Rosmary and strained the water and put the water in a spray bottle. There are times my scalp itches and the Rosemary spray seems to help.

Enjoy your trip.

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vicky58 | @vicky58 | 7 hours ago
In reply to @jacklyn "Hi there. I took hydroxy 500mg twice a day for several Months then 500mg for another..." + (show)
@jacklyn

Hi there. I took hydroxy 500mg twice a day for several
Months then 500mg for another few months. Never lost my hair and no side effects. I am 76.

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hello guys how are you? I have had ET for 1 year, I take cardioaspirin and onco-carbide, I feel good, no side effects, I am doing an experiment taking CDS, I practically bring oxygen to all the cells of my body, I will let you know if I will have improvements in my health and a reduction in the drugs prescribed by my hematologist.

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