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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nohrt4me | @nohrt4me | Mar 18 3:56pm
In reply to @mfeley "I do believe my mother had undiagnosed ET and died of a stroke at 82. I..." + (show)
@mfeley

I do believe my mother had undiagnosed ET and died of a stroke at 82. I remember her having uncontrollable nose bleeds which sounds like symptoms of ET. This was in 1997 and I don’t know what was known about this disease at that time.

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I'm sorry to hear about your mom. ET is a good guess. Dad had some nosebleeds like that toward the end. Died in 2010. My paternal grandfather died of a massive coronary embolism at 61, a possible indicator of ET. But that was 1959, so who knows? Researchers still believe that the genetic mutations are spontaneous, but because "family clusters" of MPNs have been noted, the current thinking is that we might inherit a tendency to mutate if exposed to the right carcinogens.

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circawdm | @circawdm | Mar 19 10:26am
In reply to @mfeley "I do believe my mother had undiagnosed ET and died of a stroke at 82. I..." + (show)
@mfeley

I do believe my mother had undiagnosed ET and died of a stroke at 82. I remember her having uncontrollable nose bleeds which sounds like symptoms of ET. This was in 1997 and I don’t know what was known about this disease at that time.

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My guess is that they knew nothing about it, let alone had the lab tests and equipment to test for mutations and many other important things!!

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1995victoria | @1995victoria | Mar 19 11:59am

I'm more afraid of stroke or heart attack than chemo. I've been on HU for 4 years, only first year was a little rough adjustment.

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1 reply
lea123 | @lea123 | Mar 20 12:03pm
In reply to @1995victoria "I'm more afraid of stroke or heart attack than chemo. I've been on HU for 4..." + (show)
@1995victoria

I'm more afraid of stroke or heart attack than chemo. I've been on HU for 4 years, only first year was a little rough adjustment.

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I have been taking HU at 500mg 5x per week for several years. I notice hair thinning but that could also be age related (63). But still plenty of hair.

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1 reply
1995victoria | @1995victoria | Mar 20 12:54pm
In reply to @lea123 "I have been taking HU at 500mg 5x per week for several years. I notice hair..." + (show)
@lea123

I have been taking HU at 500mg 5x per week for several years. I notice hair thinning but that could also be age related (63). But still plenty of hair.

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yes, thinning but I'm 80.....so I'm not surprised don't think it's HU or ET Luckily I still have a good head of hair.....

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stickball1 | @stickball1 | Mar 21 7:10pm

Thinning hair is the least of your problems. If that’s all you’re complaining about, you’ve got nothing to complain about. Be thankful the HU is doing its job, and that is to keep your platelet count manageable and prevent a clot forming stroke or worse. Don’t let your vanity cloud your unrelenting battle against the dozens of blood born cancers. Think baseball hats and the like.

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1 reply
nohrt4me | @nohrt4me | Mar 22 8:13am
In reply to @stickball1 "Thinning hair is the least of your problems. If that’s all you’re complaining about, you’ve got..." + (show)
@stickball1

Thinning hair is the least of your problems. If that’s all you’re complaining about, you’ve got nothing to complain about. Be thankful the HU is doing its job, and that is to keep your platelet count manageable and prevent a clot forming stroke or worse. Don’t let your vanity cloud your unrelenting battle against the dozens of blood born cancers. Think baseball hats and the like.

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It isn't vanity to worry that a disease or med will drastically change your appearance. People sometimes just want to know what to expect. And I don't know anyone who takes HU who has had to resort to ball caps.

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2 replies
janemc | @janemc | Mar 23 6:35am
In reply to @nohrt4me "It isn't vanity to worry that a disease or med will drastically change your appearance. People..." + (show)
@nohrt4me

It isn't vanity to worry that a disease or med will drastically change your appearance. People sometimes just want to know what to expect. And I don't know anyone who takes HU who has had to resort to ball caps.

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Please know, nohrt4me, that the wealth of knowledge you share from your 17 years with ET -- as well as from your decade leading an online ET forum -- is tremendously appreciated.

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jackiecarey | @jackiecarey | Mar 23 12:55pm
In reply to @nohrt4me "It isn't vanity to worry that a disease or med will drastically change your appearance. People..." + (show)
@nohrt4me

It isn't vanity to worry that a disease or med will drastically change your appearance. People sometimes just want to know what to expect. And I don't know anyone who takes HU who has had to resort to ball caps.

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well ive been on Hydroxurea for two years..I'm 77. I found it takes an adjustment period where my Hematologist adjusted the hydrox up and down. All of us are different and the medication needs to be titrated up and down depending on your lab count numbers.. AS for side effects not terrible I find the longer I'm on hydrox the easier it is to tolerate..I have a feeling you're going to do well..

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starbucks | @starbucks | Mar 23 2:09pm

I had never thought of possible losing hair or thinning hair but I guess it could be a possibility after reading this. When I went to get a haircut this week I mentioned it to my stylist. Her remarks were that she would watch my hair and adjust the style of cut to fit my hair. She also mentioned that that she would list possible products to use because of the HU but to check with my doctor before using. I’ve only been on HU and aspirin for 7 weeks.
My suggestion is get a good hair stylist.

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