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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mamsgirl1998 | @mamsgirl1998 | May 23 7:05am

Has anyone found Vitamin D helpful for ET?

nypara66 | @nypara66 | May 24 6:55am

In reply to @loribmt "Hi @beccak, Welcome to Connect. From the numbers you mentioned I’m expecting you were diagnosed with..." + (show)

I was diagnosed in Jan 2023 with PV I was 56 and no health issues or daily meds. I was shocked! Took several months to process and do my own research and I’m doing ok. I see a hematologist/oncologist. Also with testing JAK2 positive he agreed no need for bone marrow test that my labs and that test are confirmation. Some doctors insist on that and some patients need it to accept the disease. Treatment is exactly the same so I opted out of that. Good luck.

jackiecarey | @jackiecarey | May 24 6:58am

I have PV was on hydrox 500mg 7 day a week and three of those days a total of 1000mg. I had high blood pressures prior to diagnosis then numbers came down my blood pressure crashed...I'm now under the care of a Nephrologist who has cut my BP medication down to the lowest level. My PV numbers are down however my blood pressure continues to be a problem, some days I don't need any bp medication. My hematologist says she's never seen hypotention with PV however she dropped by hydrox to 500mg three times a week and my numbers are good...I'm a retired Nursing director of trauma and it seems to me as my PV numbers come down so would the hypertension. Has anyone with PV experienced Blood pressure issues? I understand PV is one of the orphan blood cancers and having difficulty finding others with PV....I have no other comorbitities. I take
one baby asa each evening....only system is fatigue sometimes extreme...Can't tell if its the PV or labile Blood pressure......

jackiecarey | @jackiecarey | May 24 7:01am

In reply to @jackiecarey "I have PV was on hydrox 500mg 7 day a week and three of those days..." + (show)

One more thing, I drink a good 10 glasses of water every day throughout the day.

nypara66 | @nypara66 | May 25 5:01am

In reply to @jackiecarey "One more thing, I drink a good 10 glasses of water every day throughout the day." + (show)

I too have PV and drink sooo much water! Excessive thirst is a thing with PV. Besides two coffees and two sodas a day, I drink 6-8 16oz bottles. I’m on Hydroxyurea 3X a week now for a year. Took about 7 months to get dosage good. No High BP for me as I was lucky to catch it the very first year it showed up. My annual physical/labs changed in just one year 😒

blondie65 | @blondie65 | May 25 8:49am

I drink a lot of water daily. My feet and ankles have been swollen in the evening. My right one is larger than my left. I elevate them when I go to bed. I wake up they are normal. This just started the past couple days. Should I be concerned?

jackiecarey | @jackiecarey | May 26 9:17am

In reply to @nypara66 "I too have PV and drink sooo much water! Excessive thirst is a thing with PV...." + (show)

A gentle question, are you aware that caffeine in coffee and soda are diuretics? Ive read for every cup of coffee you need 2 glasses of water to narrate each cup of caffeine...please research this and not take my word as gospel.

nypara66 | @nypara66 | May 26 11:56am

In reply to @jackiecarey "A gentle question, are you aware that caffeine in coffee and soda are diuretics? Ive read..." + (show)

Yes I know but I enjoy them so much. I drink so much water also and stay hydrated. If I’m forced to take these stupid pills that keep me from stroking out basically and keep me out of the sun, which I love, I’m not denying my beverages ☺️Thank you though for your comment!

jackiecarey | @jackiecarey | May 27 7:37am

In reply to @nypara66 "Yes I know but I enjoy them so much. I drink so much water also and..." + (show)

I certainly understand as I too drink coffee and tea and make up for it drinking more water. Ive read 20 ounces of water right when waking..I don't drink soda but get that ,too..I used to love the sun and the its benefits such as vitamin D etc. Ive read getting vit D from the sun is the preferred method..I do go out for 10 to 15 minutes between 11am and 12 for that reason. Quality of life has to be factored in, too.

jackiecarey | @jackiecarey | May 28 7:44am

One more thing, I find some exercise makes a difference in how I feel..Its easy to lay around since I feel achy but find if I get moving I feel better. I wake up, move around a bit, read my emails and news with a cup of coffee and get on the treadmill (hit) for 20 or so minutes..later in the day (live in a high rise) walk up 11 fights and try to get at least another 4000 steps..I do this most days..it's good for my mental well being as well as physical..Does anyone with PV have labile blood pressure issues?

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