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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Just recently diagnosed myself, at 67, and still wrapping my brain around this. Also new to this forum, so my first post is in some other thread but it is within the Essential Thrombocythemia threads. I too am concerned about the side effects of Hydroxyurea, as well as untreated ET. I did not know that hair loss was one of the side effects.
Generally speaking, rosemary is helpful for hair growth. The medication that is often mentioned for hair loss is Minoxidil. Let us know what you learn.

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@vicky58

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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What is CDS?

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@gigi05

Just recently diagnosed myself, at 67, and still wrapping my brain around this. Also new to this forum, so my first post is in some other thread but it is within the Essential Thrombocythemia threads. I too am concerned about the side effects of Hydroxyurea, as well as untreated ET. I did not know that hair loss was one of the side effects.
Generally speaking, rosemary is helpful for hair growth. The medication that is often mentioned for hair loss is Minoxidil. Let us know what you learn.

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I made the original New to Hydrea post. I have only been on it for two weeks but no side effects so far. However, no change in platelets as of last week so hope to see at least a small reduction tomorrow. I started taking biotin with keratin tablets when I started the Hydrea. Read that it doesn’t regrow hair but helps keep it. I don’t think there is any proof of that tho, just anecdotal. I don’t think it can hurt.

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@mfeley

I made the original New to Hydrea post. I have only been on it for two weeks but no side effects so far. However, no change in platelets as of last week so hope to see at least a small reduction tomorrow. I started taking biotin with keratin tablets when I started the Hydrea. Read that it doesn’t regrow hair but helps keep it. I don’t think there is any proof of that tho, just anecdotal. I don’t think it can hurt.

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Thank you @mefely. That's an interesting statement, does not help regrow, but does help keep it. I did not know this, and will look into that. If you have looked online, I'm sure you have seen that hair loss can be due to many things, from digestion, to hormonal changes, to stress, and vitamin and mineral defiencies, and dryness. I am wondering what additional stressor is created affecting hair when taking Hydroxyurea. I took a pause at this last statement and did a quick check. and this is what I found: Hydroxyurea is indeed very drying, as it can cause very dry skin, hence the itching people have talked about in this blood cancers and disorders thread, as well as constipation, among other side affects. A dry gut can cause hair loss. Perhaps massaging the scalp with almond oil, enhanced with a few drops of rosemary, chamomile and clary sage essential oil might help too? Almond oil is very hydrating an soothing for the rest of the body too. Let me know your thoughts please.

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@rjgregory440

Hydrea is an oral chemotherapy medicine that is not likely to cause hair loss with the dosages needed to treat ET. You will want to take your meds with food and a full glass of water, wash your hands after handling the meds and up your normal intake of water throughout the day to help fush the toxins through your body. Most of us here on the site only have slight reactions to the meds. Mouth sores (drinking lots of water keeps this from happening) and slight headaches occasionally are the only ones I've had. As long as I stay well hydrated I don't have any side effects.
I'm 67, have ET JAK2, and have been taking hydrea for four years now.
My medical people tell me I'm more likely to have hair loss due to stress or aging, than from the hydrea.
Please rest easy and enjoy your trip.

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I found your post very comforting, and this tells me that I am more worried about this than I thought, about the diagnosis (definitely a 5 alarm going off in my brain!), and then the worry about the side effects. Thank you.

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@gigi05

Thank you @mefely. That's an interesting statement, does not help regrow, but does help keep it. I did not know this, and will look into that. If you have looked online, I'm sure you have seen that hair loss can be due to many things, from digestion, to hormonal changes, to stress, and vitamin and mineral defiencies, and dryness. I am wondering what additional stressor is created affecting hair when taking Hydroxyurea. I took a pause at this last statement and did a quick check. and this is what I found: Hydroxyurea is indeed very drying, as it can cause very dry skin, hence the itching people have talked about in this blood cancers and disorders thread, as well as constipation, among other side affects. A dry gut can cause hair loss. Perhaps massaging the scalp with almond oil, enhanced with a few drops of rosemary, chamomile and clary sage essential oil might help too? Almond oil is very hydrating an soothing for the rest of the body too. Let me know your thoughts please.

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I’d have to look that up but it sounds very nice. And like I have read on this site, everyone seems to respond differently to this medication and has different dosages. I just hope this drug helps everyone live long, healthy lives.

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