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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1995victoria | @1995victoria | May 15 7:29am

Wishing you all the best. I have black/blue spots occasionally, but never swelling. Hope it resolves soon.

marnie12 | @marnie12 | May 16 3:07am

In reply to @blondie65 "I will definitely let you know how I make out on Thursday. I have been getting..." + (show)

If you continue to have monthly phlebotomies, you may want to ask your Dr if they can order a lab test for anemia. I had less than monthly phlebotomies for my PV and ended up with Anemia. My Hemotologist said my RBC's and hematocrit were fine so I wasn't anemic. When I went to my General Practice Physician, she did a full test for anemia including ferritin levels, etc and found that I was indeed anemic. Just something to be aware of when you are having phlebotomies on a frequent basis.

blondie65 | @blondie65 | May 17 7:06am

I had my appointment yesterday with a hand surgeon. He sent me to the hospital for an ultrasound which was negative. I’m happy about that. He has no idea what this is just a hematoma. I have a splint to wear. I go back to the hand surgeon on the 28th.
I see my oncologist today. Have blood work first. I’m sure he will adjust my medication. My hematocrit is 55.3 at the ER. I will keep you posted.

Lori, Volunteer Mentor | @loribmt | May 17 7:52am

In reply to @blondie65 "I had my appointment yesterday with a hand surgeon. He sent me to the hospital for..." + (show)

Good morning, @blondie65. That was good news about the ultrasound for your hand being negative for a blood clot. I’m wondering if you maybe bumped it, causing an internal bleed. I’m happy it’s nothing to worry about. Is the swelling going down?

Busy week for you with appointments. Good luck with the oncologist today and only good news. 😉

blondie65 | @blondie65 | May 17 6:01pm

Today I had my appointment with my oncologist. He said he had only seen one case like mine. He confirmed that this happened to my hand because my blood work was so elevated. He adjusted my Hodroxuryia. Taking two 500 mg per day. I also had a phlebotomy today. I left the office went to lunch and when I left the restaurant I felt very nauseous and faint. I think two phlebotomy’s in two weeks was too much. I came home went to bed. I feel better now.

Lori, Volunteer Mentor | @loribmt | May 17 9:17pm

In reply to @blondie65 "Today I had my appointment with my oncologist. He said he had only seen one case..." + (show)

You had quite the week! That kind of excitement you can do without, huh. 😉 Take it easy the next few days and drink plenty of water. I hope you continue to feel better. It takes a while to get your energy back after a phlebotomy. Do you receive a saline infusion after your phlebotomy? That can help with the woozies following the procedure. Have a lovely weekend…no medical excitement! ☺️

beccak | @beccak | May 21 8:47am

Is it normal to reach 1000 before treatment is started? I'm at 600 and just being monitored

Lori, Volunteer Mentor | @loribmt | May 21 1:15pm

Hi @beccak, Welcome to Connect. From the numbers you mentioned I’m expecting you were diagnosed with essential thrombocythemia (elevated platelet levels). If this is a recent discovery for you your doctor may opt to monitor your blood levels periodically to look for trends in the numbers before considering a treatment plan. If the platelets continue to rise that shows an upward trend and it may be time to discuss treatment options.

Your doctor may also suggest having a test to determine if there has been a DNA mutation in specific genes which could be causing this change your platelet levels.
Here’s a link to an article for information about ET that you might find helpful.
From Verywellhealth.com
https://www.verywellhealth.com/essential-thrombocythemia-2860907
Was this a recent diagnosis for you? Are you being seen by a hematologist?

nypara66 | @nypara66 | May 22 6:36am

In reply to @blondie65 "Today I had my appointment with my oncologist. He said he had only seen one case..." + (show)

I had one phlebotomy a week for six weeks when first being diagnosed with PV. 500 mg 2X a day is just to jump start you to get your numbers down. I do labs once a month. If you don’t have any other serious ailments, my oncologist says 600 or lower is acceptable for platelet levels. The meds can make you feel crappy until your body adjusts. I did find eating salty food and hydrating before phlebotomies helpful. Hang in there!

spuddo | @spuddo | May 23 3:31am

This also happened to me this week,up the meds and take some bloods,too much red cells and iron, ohh well I will do what I'm told

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