1. < Blood Cancers & Disorders

Essential Thrombocythemia: Making treatment decisions

Posted by mamsgirl1998 @mamsgirl1998, Jan 27 7:26pm

I have ET and was diagnosed 2 years ago. I am 50 Years old and my latest platelet count was 1,183,000. I only take a baby aspirin daily. My hematologist said I could try Hydroxyurea if I wanted. I am low risk and at first I didn’t want to take it. My platelet count continues to climb. I am thinking about trying the medication. Anyone else tried it? Any ill side effects?

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sunporch | @sunporch | Feb 17 9:11am
In reply to @mdterp76 "I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until..." + (show)
@mdterp76

I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until I was on HU, 500 mg, 2x week. I also went off of hrt for hot flashes due to concerns about clotting and strokes. I was on hrt for 20 years. Now, on HU, 500 mg, is 3x a week. The hot flashes are hourly and disturb my sleep. I am taking Evening Primrose Oil several times per day for hot flashes, but not seeing improvement. My blood work is better with the HU and iron supplement but the fatigue is interrupting my life.

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If your iron is low then the amount of oxygen that gets carried through out your body will be low causing the fatigue and tiredness. Did your Dr recommend the iron supplement or is it something you chose? Maybe discuss with the doctor what a better iron supplement might be....maybe you just need a higher dose.
Good luck and God bless.

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clareaq | @clareaq | Feb 17 11:10am
In reply to @blondie65 "Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one..." + (show)
@blondie65

Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one per day. I feel a little nauseous but that’s all. I’m confused my Doctor said I have ET but also said I have polycythemia Vera. I have been reading and from what I have read you either have one or the other but not both at the sametime. I’m going to discuss this with him on my next visit. Do any of you have any imput on this?

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Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and a suspect bone marrow biopsy that was not a good specimen. So I trusted my doctor and went along with treatment, which at first was phlebotomy and baby aspirin. My hematocrit was 48 and platelets would not be controlled so I was soon placed on Hydrea. I always felt better after a Phlebotomy which would reduce my hematocrit to around 30. Was like letting some air out of an overfilled balloon. My white count also was not in control. So I decided it was time to see an MPN Specialist. I found one at the University of Michigan. He changed my diagnosis to PV. After 10 years on Hydrea, it just was no longer controlling much so I was fortunate to start Jakafi. It’s much better at controlling my numbers and I feel so much better. I still must take 500mg of Hydrea as well to help control my platelets which were over a million even while taking Jakafi. So in my case I guess you can say I have both ET and PV but after an additional BMB my doctor concludes that my diagnosis is PV. Find an MPN Specialist… even if you must drive a distance. It’s important. You can still maintain your local doctor but having a specialist consult in your case will help.

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2 replies
blondie65 | @blondie65 | Feb 17 11:40am
In reply to @clareaq "Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and..." + (show)
@clareaq

Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and a suspect bone marrow biopsy that was not a good specimen. So I trusted my doctor and went along with treatment, which at first was phlebotomy and baby aspirin. My hematocrit was 48 and platelets would not be controlled so I was soon placed on Hydrea. I always felt better after a Phlebotomy which would reduce my hematocrit to around 30. Was like letting some air out of an overfilled balloon. My white count also was not in control. So I decided it was time to see an MPN Specialist. I found one at the University of Michigan. He changed my diagnosis to PV. After 10 years on Hydrea, it just was no longer controlling much so I was fortunate to start Jakafi. It’s much better at controlling my numbers and I feel so much better. I still must take 500mg of Hydrea as well to help control my platelets which were over a million even while taking Jakafi. So in my case I guess you can say I have both ET and PV but after an additional BMB my doctor concludes that my diagnosis is PV. Find an MPN Specialist… even if you must drive a distance. It’s important. You can still maintain your local doctor but having a specialist consult in your case will help.

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Thank you

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jacquelineh | @jacquelineh | Feb 17 11:51am
In reply to @mdterp76 "I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until..." + (show)
@mdterp76

I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until I was on HU, 500 mg, 2x week. I also went off of hrt for hot flashes due to concerns about clotting and strokes. I was on hrt for 20 years. Now, on HU, 500 mg, is 3x a week. The hot flashes are hourly and disturb my sleep. I am taking Evening Primrose Oil several times per day for hot flashes, but not seeing improvement. My blood work is better with the HU and iron supplement but the fatigue is interrupting my life.

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I am on daily Hydroxy. My GP checked out the question of HRT and put me on Progesterone in pill form with an Oestrogen patch.

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1 reply
IKEALover | @healedbytheblood0119 | Feb 17 5:18pm
In reply to @rubles "Thank you for your response. I need to ask if there is help with blood disorders..." + (show)
@rubles

Thank you for your response. I need to ask if there is help with blood disorders because my doctor does nothing so I assume nothing can be done to help. The thrombocytopenia leaves me with huge bruises on various areas of my body but mostly my legs feet arms and little bruises elsewhere. If you can provide any direction I'd appreciate it. I also wonder if the symptoms I'm having are a result of something else but I'm unable to find out as doctors haven't been helpful. The kidney problems also add to it all. Thank you again, Pamela

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Hi, you need to see a MPN Specialist as they are experts with blood disorders and issues.

Most regular Hemas like mine are too passive and don’t do much bc they don’t know.

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blondie65 | @blondie65 | Feb 18 6:29am
In reply to @loribmt "Hi @blondie65. Blood conditions can get a little confusing. It is possible to have both PV..." + (show)
@loribmt

Hi @blondie65. Blood conditions can get a little confusing. It is possible to have both PV and ET. I recently replied to two other members who share your diagnosis, @rubles and @taisaint.
Here are the links to both similar replies where you’ll find information on the Myeloproliferative Disorder that causes PV and ET.
https://connect.mayoclinic.org/comment/950331/
~~~~~
https://connect.mayoclinic.org/comment/967884/
~~~~~

These were found in this discussion group:
Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/
I hope the information is helpful! Were you having symptoms prior to being diagnosed?

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No symptoms at all. Found on routine blood work. It’s such a scary situation. My mother had lymphoma and passed at age 56. Talking to my oncologist about it and he said you both had blood disorders. He does not call it a blood cancer. Said I should live to be 80. I freaked out I’m already 65 this is not long enough.

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3 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Feb 18 8:43am
In reply to @blondie65 "No symptoms at all. Found on routine blood work. It’s such a scary situation. My mother..." + (show)
@blondie65

No symptoms at all. Found on routine blood work. It’s such a scary situation. My mother had lymphoma and passed at age 56. Talking to my oncologist about it and he said you both had blood disorders. He does not call it a blood cancer. Said I should live to be 80. I freaked out I’m already 65 this is not long enough.

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Good morning, @blondie65 I expect you have a doctor who is younger than 65, right? From his perspective, 80 is ‘old’. Telling you that you’ll live to be 80 isn’t a firm date…it’s letting you know, with treatment, you have a long life ahead of you. 80 isn’t the cut-off date.

In my previous reply for you, I posted inks to conversations with other members who have both ET and PV. Those comments contained links to artcles on myeloproliferative neoplasms (MPN) the classification of blood disorder with your diagnoses.
Here are two of the articles. Some doctors refer to MPNs as disorders. Others call these disorders blood cancers…depends on the doctors. Either way, with treatment, often these can be well controlled.
https://my.clevelandclinic.org/health/diseases/24144-myeloproliferative-neoplasms
~~
https://www.healthline.com/health/cancer/myeloproliferative-disorders
I know how frightening it is to have any diagnosis with ‘cancer’ in its name’. In my case it was an aggressive form of leukemia diagnosied at 65. I’m now 70, in full remission and have no cut off date! My doctor said I have a normal life expectancy now and the way I feel this should have me riding into triple digits. 😅
So my advice is just continue to live and enjoy your life…to 80 and beyond!

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Mentor
Lori, Volunteer Mentor | @loribmt | Feb 18 9:01am
In reply to @clareaq "Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and..." + (show)
@clareaq

Initially I was diagnosed with ET. This diagnosis was made based on my high platelets and a suspect bone marrow biopsy that was not a good specimen. So I trusted my doctor and went along with treatment, which at first was phlebotomy and baby aspirin. My hematocrit was 48 and platelets would not be controlled so I was soon placed on Hydrea. I always felt better after a Phlebotomy which would reduce my hematocrit to around 30. Was like letting some air out of an overfilled balloon. My white count also was not in control. So I decided it was time to see an MPN Specialist. I found one at the University of Michigan. He changed my diagnosis to PV. After 10 years on Hydrea, it just was no longer controlling much so I was fortunate to start Jakafi. It’s much better at controlling my numbers and I feel so much better. I still must take 500mg of Hydrea as well to help control my platelets which were over a million even while taking Jakafi. So in my case I guess you can say I have both ET and PV but after an additional BMB my doctor concludes that my diagnosis is PV. Find an MPN Specialist… even if you must drive a distance. It’s important. You can still maintain your local doctor but having a specialist consult in your case will help.

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Welcome to Connect, @clareaq. Your experince shows the importance of working with a MPN specialist when you have a myeloproliferative disorder such as PV or ET. Thank you for sharing your story and valuable insight with other members in the group.
How often do you have followup blood work?

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1 reply
sregiani | @sregiani | Feb 18 9:23am
In reply to @rubles "Thank you for your response. I need to ask if there is help with blood disorders..." + (show)
@rubles

Thank you for your response. I need to ask if there is help with blood disorders because my doctor does nothing so I assume nothing can be done to help. The thrombocytopenia leaves me with huge bruises on various areas of my body but mostly my legs feet arms and little bruises elsewhere. If you can provide any direction I'd appreciate it. I also wonder if the symptoms I'm having are a result of something else but I'm unable to find out as doctors haven't been helpful. The kidney problems also add to it all. Thank you again, Pamela

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Agreed! You’ll find better responses w/an MPN specialist. I was fortunate that my primary, a naturopathic MD has a friend who is a Heme/Onc dept head.

In the meantime, you can do an online search for the MPN Research Assoc. They have links to the latest science, and you can sign up for their magazine. See esp the search bar, “Living With…”

Very helpful!

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clareaq | @clareaq | Feb 18 11:33am
In reply to @loribmt "Welcome to Connect, @clareaq. Your experince shows the importance of working with a MPN specialist when..." + (show)
@loribmt

Welcome to Connect, @clareaq. Your experince shows the importance of working with a MPN specialist when you have a myeloproliferative disorder such as PV or ET. Thank you for sharing your story and valuable insight with other members in the group.
How often do you have followup blood work?

Jump to this post

As my hemoglobin has been so low, they’ve had to modify my meds a bit and keep checking my iron, I have labs done every 3 weeks. Even though my iron has been ‘normal’ my doctor decided to have me get two iron infusions because a low hemoglobin can also cause platelets to rise. It actually helped. My hemoglobin went from 9.2 to 11 in three weeks. My platelets did not go up. It does seem my low hemoglobin will be a constant battle.

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