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.

mfeley | @mfeley | Mar 6 2:52pm

In reply to @loribmt "Hi Margy! When I see replies like yours it can’t help but make me smile! Your..." + (show)

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

mfeley | @mfeley | Mar 6 3:00pm

In reply to @starbucks "I was diagnosed with ET on Feb 3 due to very high platelets and some symptoms..." + (show)

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.

starbucks | @starbucks | Mar 6 4:02pm

In reply to @mfeley "I’m glad you are doing okay with the Hydrea and that it is helping. I have..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Mar 6 6:41pm

In reply to @mfeley "I’m glad you are doing okay with the Hydrea and that it is helping. I have..." + (show)

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! 😅

mfeley | @mfeley | Mar 6 7:30pm

In reply to @loribmt "You and I have something in common with our summers in northern Wisconsin! Looking forward to..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Mar 6 8:51pm

In reply to @mfeley "Cool, my place is in Presque Isle. I’m headed up on Tuesday and need the driveway..." + (show)

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.

nypara66 | @nypara66 | Mar 7 6:39am

In reply to @starbucks "I was diagnosed with ET on Feb 3 due to very high platelets and some symptoms..." + (show)

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!

mfeley | @mfeley | Mar 7 7:11am

In reply to @loribmt "If you’re in Presque Isle, we’re only about 35 miles apart…as the crow flies! Our cabin..." + (show)

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.

Lori, Volunteer Mentor | @loribmt | Mar 7 7:31am

In reply to @mfeley "Hi Lori, That’s cool that you are in St. Germaine so you know what life in..." + (show)

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! 😅

starbucks | @starbucks | Mar 7 8:01am

In reply to @nypara66 "Hi, I’m 58 and was diagnosed with PV just over two years ago and put on..." + (show)

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

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