1. < Blood Cancers & Disorders

Essential thrombocythemia

Posted by Tessa @tessa, Nov 12, 2011

I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.

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janemc | @janemc | Oct 11 6:12am
In reply to @taraamato "Hi Steve, I was just diagnosis with ET yesterday after my bone marrow biopsy came back..." + (show)
@taraamato

Hi Steve, I was just diagnosis with ET yesterday after my bone marrow biopsy came back and also having the Jak2 gene mutation. I was just put on the Hydroxyurea as of yesterday and was wondering from you what are the side effects? I do feel some nausea and wondering about the dizziness and loss of hair? Has your wife gone thru any side effects? Also, I have severe numbness and tingling feeling below my knees (calves, ankles and feet are effected) by the ET not everyone has the loss of sensation but I have, so much so it has caused me to be out of work for 8 wks due to the fact that my job requirements are to be on my feet 8 hrs a day. I am 52 years old and never had any other disorder so this was a shock for me as I'm sure for your wife as well. I should mention I have had every blood test imaginable and my platelet levels are extremely high, red and white are normal.

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You've been dealt a tough hand . . hang in there.

As nohrt4me says, getting the platelet count down is the key to bringing ET issues under control.

In time, and for most people, HU (hydroxyurea) works wonders.

From others here, I'll pass on the excellent suggestion to always take HU with food, and to drink plenty of water during the day. This gives the medication its best chance to work without any side effects.

We're rooting for you!

REPLY
janemc | @janemc | Oct 11 6:14am
In reply to @nohrt4me "Sounds like Becky has been through quite a lot. I am looking at mitral valve repair,..." + (show)
@nohrt4me

Sounds like Becky has been through quite a lot. I am looking at mitral valve repair, but am holding off until I can be sure insurance will pay for the transcath procedure instead of open heart surgery.

In dealing with a variety of co-morbidities along with ET, I've learned that a) most docs have never heard of ET, and b) the better you can get the platelets under control, the easier it is to deal with all the other stuff.

I would ask the doc if he thinks a bone marrow would be useful. And you can ask if other blood cancers have been ruled out. My guess is that the blood tests that detected the JAK2 included tests also ruled out leukemia or other cancers.

The good news is that hematologists are WAY more up on ET and other MPNs than they were 10 years ago. So diagnoses can be made better and faster.

Doctors still need to do better helping patients understand the disease.

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I'm so sorry to hear about your cardiac issues.

You are such a shining light here . . . . you are appreciated.

REPLY
1 reply
taraamato | @taraamato | Oct 11 8:34am
In reply to @bshattuck138 "Hi. I'm glad they found the issue before you had a blood clot. What was your..." + (show)
@bshattuck138

Hi. I'm glad they found the issue before you had a blood clot. What was your platelet level and what's the dosage of your Hydrea? Becky's gums are a little sore for the last couple of days but she is not sure if it's related. Other than that, she has no side effects.
She is on 500mg of the Hydroxy, once per day. Her platelet level was in the mid 600's when we started wondering if something was going on but she had no symptoms from that.
Hope that helps and I hope you can get to the bottom of your side effects. I would think it would be a good idea to talk to your oncologist regarding the side effects you are having.
Good luck and keep in touch if it helps. I think this forum is outstanding.
Steve

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Hi Steve, thank you for getting back to me, my platelets are much higher 1152.

REPLY
1 reply
nohrt4me | @nohrt4me | Oct 11 1:10pm
In reply to @janemc "I'm so sorry to hear about your cardiac issues. You are such a shining light here..." + (show)
@janemc

I'm so sorry to hear about your cardiac issues.

You are such a shining light here . . . . you are appreciated.

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How nice of you to say that! I have learned a lot from others in 10 years. So far the mitral valve has not caused any heart damage. I will have my next check in January, and I am thinking the best window to fix this is within the next couple years while my platelets are stable. My hematologist asks me about the heart valve at every visit, so I know she's on track. I am also fortunate to be in a system which uses a "universal chart," so me, the GP, hematologist, cardiologist, and all the other-ologists can read what's going on.

REPLY
bshattuck138 | @bshattuck138 | Oct 11 2:03pm
In reply to @nohrt4me "Sounds like Becky has been through quite a lot. I am looking at mitral valve repair,..." + (show)
@nohrt4me

Sounds like Becky has been through quite a lot. I am looking at mitral valve repair, but am holding off until I can be sure insurance will pay for the transcath procedure instead of open heart surgery.

In dealing with a variety of co-morbidities along with ET, I've learned that a) most docs have never heard of ET, and b) the better you can get the platelets under control, the easier it is to deal with all the other stuff.

I would ask the doc if he thinks a bone marrow would be useful. And you can ask if other blood cancers have been ruled out. My guess is that the blood tests that detected the JAK2 included tests also ruled out leukemia or other cancers.

The good news is that hematologists are WAY more up on ET and other MPNs than they were 10 years ago. So diagnoses can be made better and faster.

Doctors still need to do better helping patients understand the disease.

Jump to this post

Good luck with the mitral valve.
Becky's bovine aortic valve was done in 2019. We were hoping it would last 10 years before she needed a TAVR to replace it but apparently her pressures are going up in the valve so we'll see how that goes over the next year.
Thanks for the suggestions. Good ideas.
Steve

REPLY
bshattuck138 | @bshattuck138 | Oct 11 2:06pm
In reply to @taraamato "Hi Steve, thank you for getting back to me, my platelets are much higher 1152." + (show)
@taraamato

Hi Steve, thank you for getting back to me, my platelets are much higher 1152.

Jump to this post

So you may be on a higher dose of Hydrea which may be why your having symptoms. The suggestion of taking the meds with food and drinking lots of water throughout the day I think are great ideas.
Good luck and keep in touch,
Steve

REPLY
mdterp76 | @mdterp76 | Oct 13 10:25am

Excellent news that you consulted at the Mayo Clinic! That's a great plan for someone planning a family in the future. Did they check for Jak2 and your allele burden? I've been taking baby aspirin since my 30s for sticky blood. I developed Hashimotos after my 3rd child was born and the endocrinologist picked up on the sticky blood. That was 37 years ago and my diagnosis of ET came just last year at age 69. I'm doing great on 500 mg of HU, 4x a week, daily baby aspirin, and daily iron. Have they done an iron panel on you? I used to lose a lot of blood (and had big clots) during my periods. This is now thought to be connected to blood issues. We can live a long time with this chronic disease and have families. Live a healthy lifestyle and you'll do great! Yes, it's called blood cancer as of 2013, but it's not tumor-based, but if monitored it can be managed. The only reason I take HU is that I am over 60 and at higher risk for thrombotic events. Wishing you well in this new journey.
Karla

REPLY
2 replies
nohrt4me | @nohrt4me | Oct 14 9:32am
In reply to @mdterp76 "Excellent news that you consulted at the Mayo Clinic! That's a great plan for someone planning..." + (show)
@mdterp76

Excellent news that you consulted at the Mayo Clinic! That's a great plan for someone planning a family in the future. Did they check for Jak2 and your allele burden? I've been taking baby aspirin since my 30s for sticky blood. I developed Hashimotos after my 3rd child was born and the endocrinologist picked up on the sticky blood. That was 37 years ago and my diagnosis of ET came just last year at age 69. I'm doing great on 500 mg of HU, 4x a week, daily baby aspirin, and daily iron. Have they done an iron panel on you? I used to lose a lot of blood (and had big clots) during my periods. This is now thought to be connected to blood issues. We can live a long time with this chronic disease and have families. Live a healthy lifestyle and you'll do great! Yes, it's called blood cancer as of 2013, but it's not tumor-based, but if monitored it can be managed. The only reason I take HU is that I am over 60 and at higher risk for thrombotic events. Wishing you well in this new journey.
Karla

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Yes, heavy periods and clots for many years. Also a history of miscarriages. (Docs always assumed it was endometriosis, though that was never tested.) There seems to be a correlation, but actual cause-and-effect has never been established. But I hear this so much from other women that I hope researchers take it up. Especially since ET affects women by a large margin over men.

REPLY
taraamato | @taraamato | Oct 15 10:04am
In reply to @mdterp76 "Excellent news that you consulted at the Mayo Clinic! That's a great plan for someone planning..." + (show)
@mdterp76

Excellent news that you consulted at the Mayo Clinic! That's a great plan for someone planning a family in the future. Did they check for Jak2 and your allele burden? I've been taking baby aspirin since my 30s for sticky blood. I developed Hashimotos after my 3rd child was born and the endocrinologist picked up on the sticky blood. That was 37 years ago and my diagnosis of ET came just last year at age 69. I'm doing great on 500 mg of HU, 4x a week, daily baby aspirin, and daily iron. Have they done an iron panel on you? I used to lose a lot of blood (and had big clots) during my periods. This is now thought to be connected to blood issues. We can live a long time with this chronic disease and have families. Live a healthy lifestyle and you'll do great! Yes, it's called blood cancer as of 2013, but it's not tumor-based, but if monitored it can be managed. The only reason I take HU is that I am over 60 and at higher risk for thrombotic events. Wishing you well in this new journey.
Karla

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Hi Karla,
Do you have and tingling feeling , numbness and pain in your legs from ET? I’m not sure if it’s from ET or a separate issue. I’m also on aspirin, iron , along with the HU. How high were your platelets?

REPLY
2 replies
mdterp76 | @mdterp76 | Oct 15 10:12am
In reply to @taraamato "Hi Karla, Do you have and tingling feeling , numbness and pain in your legs from..." + (show)
@taraamato

Hi Karla,
Do you have and tingling feeling , numbness and pain in your legs from ET? I’m not sure if it’s from ET or a separate issue. I’m also on aspirin, iron , along with the HU. How high were your platelets?

Jump to this post

Hi! I don't have the tingling that you describe. My feet are still one good thing left on my body. Have you been checked for neuropathy? Also, have your B12 levels checked. I take a cherry flavored B12 sublingual for low B12 and it gives me more energy too.
Take care!

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