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Polycythemia Vera or Essential Thrombocythemia ?
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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I had a discussion w/my doctor about the sun. I live in Hawaii so I'm a sun worshiper. He said just use some common sense about it. To which I said, "Ok, so no baby oil?" And he said--putting his hands like an open book, "And no mirrors." 🙂 So I lay out for about 15-30 mins per day and I have not had any ill effects. I do get hot flashes (again--thought I was done with that--guess not). And I sometimes feel like my shins are sunburned (when they are not), but the sensation goes away quickly -- maybe in 5-10 mins. I am 72 yo on 500mg Hydroxyurea 6 days/wk and one baby aspirin daily for a year now.
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1 ReactionI too spoke with my Hematologist and again asked about the sun mainly for the preferred way to get vitamin D.
I was told 10-15 minutes a day, use common sense and don't overdo..However sun is not out everyday, If it is I go out before noon and I see a dermatologist every 6 months...I have PV, everyone is different, I noticed a flushing after sun exposure which goes away quickly, I strickly stick 10-15 minutes in the sun..Everyone is different, check with your Doctor first...
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2 ReactionsI was told just to make sure I use sun block.
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1 ReactionEveryone of us is different, so be sure to work w/your docs and keep asking questions!
I had extensive MOHS for BCC 4 years ago, and was told by my reconstructive surgeon it was necessary for me to get “sensible sun” after 2pm. I see my dermatologist twice a year, and they prefer I stay out of the sun and take 5000 IU of VitD w/K2!
So, I asked my primary and my Heme doc, and they both said it was better for me to out outside after 2pm and wear a hat. So that’s what I do 🙂
Blood work shows my Vit D levels stay in the low 80’s. This keeps my primary (functional med doc) happy as it also helps maintain strong bones.
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3 ReactionsI see an oncologist/hematologist at a cancer medical center attached to a hospital center. They do my blood work first and by the time I see the doctor, within 30 minutes, he has reviewed the blood work and is ready to discuss. You may want to go with a doctor that can get the results back faster. Also, my results are in the patient portal and I can review them. If you are in Maryland, I can recommend a very caring doctor, Vinni Juneja. He's very open to me reading about my illness and we make joint decisions about my treatment plan.
Karla
Especially after radiation skin can be hypersensitive to Sun. Sun blockers and shade hat help. Use hypoallergenic brands. I like straw lifeguard hats.
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1 Reactionhow did you find a good functional med doc..I'm looking but so far no luck where I feel comfortable.
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1 ReactionMy Functional Doc belongs to ICIMED. You can do an online search, and look for someone near you. Good luck!