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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@loribmt

Hi Margy! When I see replies like yours it can’t help but make me smile! Your positivity is infectious. I’ve found being positive can wonders for how we cope and adapt to life changes. So keep up the good work! ☺️

Fingers cross for a great response to the HU. It has a great track record for bringing platelet levels under control. How often will you repeat labs??

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Every week for the next 6 weeks, then I see the doctor again. Thanks!

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@starbucks

I was diagnosed with ET on Feb 3 due to very high platelets and some symptoms that I took as normal. Currently I am on HU 500 daily and low dose aspirin. They also did some genetic testing and waiting for some results. On March 17 th I will have a bone marrow biopsy and then April 7th a consult to discuss a plan. After 3 weeks on HU most aches have disappeared, headaches and blurry vision and my platelets have gone down.
Presently I am in Az where I have found the HU is causing sun sensitivity and some burning on my inner thighs after riding my horse and biking. Walking my dogs lessens it.
We return to Wisconsin shortly where there isn’t much hot weather now.
This was quite a shock to get this diagnosis since I was just going in to check my vitamin D level for my prolia shot. I was feeling normal so I thought.
I’ll take this diagnosis and medicine if it means what the Hemotology doctor says that I can live for many more years. I am 73.
I’ve been reading this blog for a few weeks and finally decided to comment. I really appreciate all the enteries since the information really helps adjust to the diagnosis of cancer.

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I’m glad you are doing okay with the Hydrea and that it is helping. I have a cabin in Northern WI and spend lots of time there year round. We can get some good summer sun and I love floating on the lake so I’m going to still try that with sunscreen and a big hat. I too was pretty shocked that I have something wrong me because I feel great. Who knew? All could be worse so I’m thankful there is a treatment.

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@mfeley

I’m glad you are doing okay with the Hydrea and that it is helping. I have a cabin in Northern WI and spend lots of time there year round. We can get some good summer sun and I love floating on the lake so I’m going to still try that with sunscreen and a big hat. I too was pretty shocked that I have something wrong me because I feel great. Who knew? All could be worse so I’m thankful there is a treatment.

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Our daughter and son in law have a cabin in northern wi. west of Hayward. I agree lots of sunscreen
and spf clothing and hat should help. I am using a doctor at UW Carbone center in Madison but eventually may see a doctor at Mayo so I have care when we return to Tucson next year.

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@mfeley

I’m glad you are doing okay with the Hydrea and that it is helping. I have a cabin in Northern WI and spend lots of time there year round. We can get some good summer sun and I love floating on the lake so I’m going to still try that with sunscreen and a big hat. I too was pretty shocked that I have something wrong me because I feel great. Who knew? All could be worse so I’m thankful there is a treatment.

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You and I have something in common with our summers in northern Wisconsin! Looking forward to the having the ice out…though we just had 11 inches of snow yesterday. Slight delay in spring! 😅

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@loribmt

You and I have something in common with our summers in northern Wisconsin! Looking forward to the having the ice out…though we just had 11 inches of snow yesterday. Slight delay in spring! 😅

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Cool, my place is in Presque Isle. I’m headed up on Tuesday and need the driveway plowed. Last year mid March the ice was out. Probably not this year. Each year is different.

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@mfeley

Cool, my place is in Presque Isle. I’m headed up on Tuesday and need the driveway plowed. Last year mid March the ice was out. Probably not this year. Each year is different.

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If you’re in Presque Isle, we’re only about 35 miles apart…as the crow flies! Our cabin is in St Germain!
Last year was a rarity with the ice out so early. I remember the water fowl returning long before anticipated! I know we’ve had years with people ice fishing on opening day for fishing season first weekend in May. 😅
Safe travels to Presque Isle! Maybe you’ll be lucky and the snow will melt by Tuesday.

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@starbucks

I was diagnosed with ET on Feb 3 due to very high platelets and some symptoms that I took as normal. Currently I am on HU 500 daily and low dose aspirin. They also did some genetic testing and waiting for some results. On March 17 th I will have a bone marrow biopsy and then April 7th a consult to discuss a plan. After 3 weeks on HU most aches have disappeared, headaches and blurry vision and my platelets have gone down.
Presently I am in Az where I have found the HU is causing sun sensitivity and some burning on my inner thighs after riding my horse and biking. Walking my dogs lessens it.
We return to Wisconsin shortly where there isn’t much hot weather now.
This was quite a shock to get this diagnosis since I was just going in to check my vitamin D level for my prolia shot. I was feeling normal so I thought.
I’ll take this diagnosis and medicine if it means what the Hemotology doctor says that I can live for many more years. I am 73.
I’ve been reading this blog for a few weeks and finally decided to comment. I really appreciate all the enteries since the information really helps adjust to the diagnosis of cancer.

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Hi, I’m 58 and was diagnosed with PV just over two years ago and put on HU Immediately. I too had extreme sensitivity to sun and also tooth pain. As months went on, I slowly adjusted and when the dosage was lowered those symptoms pretty much went away. PV can cause all kinds of nueropathy so the tooth pain still pops up occasionally. I get labs once a month and need phlebotomies every ten weeks or so. Good luck and good health!

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@loribmt

If you’re in Presque Isle, we’re only about 35 miles apart…as the crow flies! Our cabin is in St Germain!
Last year was a rarity with the ice out so early. I remember the water fowl returning long before anticipated! I know we’ve had years with people ice fishing on opening day for fishing season first weekend in May. 😅
Safe travels to Presque Isle! Maybe you’ll be lucky and the snow will melt by Tuesday.

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Hi Lori, That’s cool that you are in St. Germaine so you know what life in the Northwoods is like. I’d like to thank you for being a volunteer mentor for the blood cancer and disorders support group. You never know, our paths may cross one day. I hear the new Marty’s on 51 is a must go to.

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@mfeley

Hi Lori, That’s cool that you are in St. Germaine so you know what life in the Northwoods is like. I’d like to thank you for being a volunteer mentor for the blood cancer and disorders support group. You never know, our paths may cross one day. I hear the new Marty’s on 51 is a must go to.

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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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@nypara66

Hi, I’m 58 and was diagnosed with PV just over two years ago and put on HU Immediately. I too had extreme sensitivity to sun and also tooth pain. As months went on, I slowly adjusted and when the dosage was lowered those symptoms pretty much went away. PV can cause all kinds of nueropathy so the tooth pain still pops up occasionally. I get labs once a month and need phlebotomies every ten weeks or so. Good luck and good health!

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Thank you. I also feel like my teeth are different too.
You stay healthy too.

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