1. < Blood Cancers & Disorders

Polycythemia Vera or Essential Thrombocythemia ?

Posted by btwheels @btwheels, Jan 21 11:22am

My wife, Pam had a follow-up appt on Friday, due to extreme weather and bad roads, it was rescheduled to afternoon. We repeatedly asked about labs, and were told there wasn’t an order for labs.
The Dr had started Pam on 1000mg x 2 times a day HU 2 weeks ago. Before starting on the drug dosage, her platelet count was 1019 and her RBC was 5.86. Now after 2 weeks on the 2000/day HU, her platelet count has dropped dramatically to 308, while her RBC count remains high at 5.27, only dropping slightly.
In addition she now shows a high BUN @22, and BA(Basophilia) at 3.3%.

Since we had a Friday appt, the Dr has not had a chance to see the updated CBC’s and I am concerned about her dosage of HU.

I would appreciate thoughts and information, as we won’t get to communicate with a PA or pharmacist until later Monday or Tuesday.

So far, she is doing great with only minor side effects.

Thanks,
Brad

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btwheels | @btwheels | Jan 21 11:23am

Forgot to mention the Dr did order labs after her appt, and we received the results yesterday…

REPLY
nypara66 | @nypara66 | Jan 22 6:27am

Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage to start the hydroxyurea on. When first diagnosed with PV, my platelets were 800. I was put on 500 mg daily. After two months, lowered to 5X a week. It takes about 6-8 months to get the dosage correct. I’m aware that they can to-yo it throughout your lifetime depending on your labs. I’m currently taking it just 3X a week . My red cells remain high but they aren’t too concerned with that as long as my platelets are 600 or under, hematocrit doesn’t go over 45 and white cells stay reasonable. I am 57 and diagnosed with PV one year ago this month. Hang in there!

REPLY
2 replies
dherrman2 | @dherrman2 | Jan 22 9:08am
In reply to @nypara66 "Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage..." + (show)
@nypara66

Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage to start the hydroxyurea on. When first diagnosed with PV, my platelets were 800. I was put on 500 mg daily. After two months, lowered to 5X a week. It takes about 6-8 months to get the dosage correct. I’m aware that they can to-yo it throughout your lifetime depending on your labs. I’m currently taking it just 3X a week . My red cells remain high but they aren’t too concerned with that as long as my platelets are 600 or under, hematocrit doesn’t go over 45 and white cells stay reasonable. I am 57 and diagnosed with PV one year ago this month. Hang in there!

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I have had PV for 14 years. I have been taking 1000 mg daily since then. My platelets are around 409 and my hemoglobin fluctuates. When it gets to 44 to 45 I get a phlebotomy.

REPLY
debhammel | @debhammel | Jan 23 6:52am
In reply to @nypara66 "Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage..." + (show)
@nypara66

Hi Brad, Of course I’m not a doctor but that seems like an awfully high dosage to start the hydroxyurea on. When first diagnosed with PV, my platelets were 800. I was put on 500 mg daily. After two months, lowered to 5X a week. It takes about 6-8 months to get the dosage correct. I’m aware that they can to-yo it throughout your lifetime depending on your labs. I’m currently taking it just 3X a week . My red cells remain high but they aren’t too concerned with that as long as my platelets are 600 or under, hematocrit doesn’t go over 45 and white cells stay reasonable. I am 57 and diagnosed with PV one year ago this month. Hang in there!

Jump to this post

I suspect the doc started her on a high level of HU because her platelets were so high. My heme-onc told me the danger zone is over 1000 level of platelets - that's when there is a much higher incident of heart attack, stroke, pulmonary embolism - all of which can kill you. Looks like the high does did the trick since her platelets came down to 308 - within normal limits! Hopefully her doctor will reduce the dosage now that she is out of immediate danger. 🙂

REPLY
2 replies
nypara66 | @nypara66 | Jan 23 7:38am

Yes probably so. It’s a guessing game for the first year to actually find the right dosage once they get the platelets down. It’s important to keep up with your labs to avoid clots etc.

REPLY
btwheels | @btwheels | Jan 23 8:11am
In reply to @debhammel "I suspect the doc started her on a high level of HU because her platelets were..." + (show)
@debhammel

I suspect the doc started her on a high level of HU because her platelets were so high. My heme-onc told me the danger zone is over 1000 level of platelets - that's when there is a much higher incident of heart attack, stroke, pulmonary embolism - all of which can kill you. Looks like the high does did the trick since her platelets came down to 308 - within normal limits! Hopefully her doctor will reduce the dosage now that she is out of immediate danger. 🙂

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We are hoping to get a call back today to adjust the dosage:)
Thanks!

REPLY
btwheels | @btwheels | Jan 24 8:07am

Update: They have adjusted her dosage of HU down to 1000mg in the morning, and 500mg in the evening, so 1500mg total/day.

Next appt is Feb. 2nd😀

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 1 2:36pm
In reply to @btwheels "Update: They have adjusted her dosage of HU down to 1000mg in the morning, and 500mg..." + (show)
@btwheels

Update: They have adjusted her dosage of HU down to 1000mg in the morning, and 500mg in the evening, so 1500mg total/day.

Next appt is Feb. 2nd😀

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All the best for the appointment tomorrow. Have you got a list of questions to ask?

REPLY
IKEALover | @healedbytheblood0119 | Feb 5 6:52am
In reply to @debhammel "I suspect the doc started her on a high level of HU because her platelets were..." + (show)
@debhammel

I suspect the doc started her on a high level of HU because her platelets were so high. My heme-onc told me the danger zone is over 1000 level of platelets - that's when there is a much higher incident of heart attack, stroke, pulmonary embolism - all of which can kill you. Looks like the high does did the trick since her platelets came down to 308 - within normal limits! Hopefully her doctor will reduce the dosage now that she is out of immediate danger. 🙂

Jump to this post

The danger zone is considered 1000?
My Hema was saying ppl get past 1 million and that once reach a million that’s considered a real issue.

REPLY
1 reply
debhammel | @debhammel | Feb 5 9:05am
In reply to @healedbytheblood0119 "The danger zone is considered 1000? My Hema was saying ppl get past 1 million and..." + (show)
@healedbytheblood0119

The danger zone is considered 1000?
My Hema was saying ppl get past 1 million and that once reach a million that’s considered a real issue.

Jump to this post

My blood tests report platelet levels as 400, 500, 1000, etc., and my hematologist explained that what that really means is 400,000, 500,000, 1,000,000. So 1000 = 1,000,000 and is the danger zone.

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