Polycythemia Vera: Just been diagnosed

I am a 25 year old female and was diagnosed with PV about two weeks ago. I believe it is more of a preliminary diagnosis since my hematology/oncology appt isn’t until July 17th. Anyway, the numbers that caught the doctors eye was my hemoglobin at 16.8 and hematocrit at 49.8. I got more blood work a month later to see if I could get it lowered and I did, to a 15.8 and 45.8. I did this by more water intake (as I am always dehydrated), aspirin and exercise. I am very nervous about my Oncologist appointment coming up but it is a ways away and I still am battling fatigue and shortness of breath every day. Should I push for more blood work and for some sort of immediate relief? Or just ride it out and see what they say in July. I am very nervous about the diagnosis and my doctor hasn’t said much else so I am left to google and to stress myself out. After the diagnosis now I really just want to know more and what I need to do to feel better.

Yes, I know I should not speak off the cuff about clotting, but as I've had very high platelets for 30 years, and only this year (because I hit 65) was given a diagnosis, the sense of danger is somehow different for me. I've been walking the tightrope for a long time evidently. Also, I have to put the fear in its place or it gets the best of me, especially when I'm in a position of waiting. When I can act with confidence, I will.

I did get a second opinion back in December before starting on Besremi--via video at the Mayo clinic. But now, seeing how complex treatment can be, I'd prefer my local doctor to have a bit more experience in MPNs. I see my clinic has a few who MIGHT be more helpful finding trials, weighing treatments, etc.

About supplements and the liver, I did worry about that some but again do not have a specialist to refer this issue to. My second opinion doc at the Mayo was not particularly adverse to me taking some of the supplements suggested as improving inflammation woes. I take an immune boosting mushroom formula, NAC and now, post liver enzyme problem, curcumin.

Well…the first thought that ran through my mind was, “You do know that blood clots can be instantly fatal, right?”
With high hematocrit and high platelets there may come a time when aspirin therapy won’t be enough to stop clots from forming. I’m just playing devil’s advocate here… ☺️
There are worse things than having to take a medication for life, to stay alive.
Believe me, I can appreciate your thoughts about ‘chemo’ meds. For all of my adult life I avoided meds like the plague. Just when I thought I’d be cruising into my golden years having sidestepped any prescriptions old age seems to bring, within 3 weeks I went from being perfectly healthy with no meds at all to a poster child for big pharma. I am living proof that there is indeed ‘better living through chemistry’. Sometimes we need these drugs with the frightening fine print to save our lives, prolong them or just buy time. Just tossing it out there to never say never.

Awkwardness aside, changing doctors is your right. If you’re not entirely comfortable with your current physician, you owe it to yourself to get a second opinion. It’s usually as simple as placing a phone call. If you already have a doctor in mind, that is a great place to start. I found a good discussion you might want to peruse regarding getting a second opinion. I’ve posted the link for you.
https://connect.mayoclinic.org/discussion/second-opinion-8/
I think getting another perspective on your ET will give you peace of mind.
Are you still seeing your acupuncturist? Is this helping with some of your symptoms?
One other thing I wanted to touch on regarding your elevated liver numbers. Were you taking herbal supplements with the Basremi?

Thanks, Lori.

I'd almost rather take my chances with clotting than take chemo for the rest of my life, knowing that it will never solve the problem, just kick it down the road. I think of its side effects on the rest of my body, and resent it. We'll see if I am forced to reconsider.

Right now, I'm trying to figure out how to change doctors at my local clinic. My doctor is kind and concerned but is fearful of all the newer drugs, and never offers to look into them or look into trials, etc. There is a doc at the clinic however who is on one "MPN Specialist" list--a Dr Yasenchek. I don't know how to make the switch, and it will be awkward if I have to face my current doctor and explain that he does not seem to have the training for this rare disorder.

Hi @treeore Love the idea of your new toy for summer! You’ll have a blast out on your SUP board! Great for balance and core muscles too! Just watch out for crazy/rude boaters. They can have you taking an unexpected plunge. I’m happy to hear you’re working on sun protection. Being on immunosuppressants can really leave us vulnerable to skin cancer but doesn’t stop us from having fun in the sun.

It’s a shame that you had to stop the Besremi before the treatment was complete because it sounds like it was pretty successful in making the improvements in your blood numbers. I wonder (providing the insurance gets worked out) if a reduced treatment of one shot per month would help your liver and still provide improvement in your numbers. Would you consider self injection?

Sorry that your liver took a little hit but I see that’s listed as one of the potential side effects. Fortunately, livers can be remarkably resilient with their ability to recover. I went through similar with all the chemo on my crazy AML/transplant odyssey. Those pesky liver numbers became a focal point for my doctors. But now, 4 years later those numbers are back to ‘right down the middle’…though my liver does remain touchy. If I do anything to offend it (😅) it will be reflected in my next blood test. I follow a healthy liver detox diet too. Not sure whether or not it actually helps or if it’s just being off all the meds…but it can’t hurt.

I do believe there are other options besides HU to treat PV and high platelets. Jakafi comes to mind. That may be something to talk over with your doctor. Is there any particular reason why you’re not wanting to try Hydroxyurea?

Hi Lori, Besremi did the trick on HCT and more than halved my Platelets in 6 injections; however, my liver enzymes were elevated and the doctor took me off it. (The side effects were not happy, but I would have forged on if not for the liver.) Now after more than a month off Besremi, my platelets are rising again. The clinic and Medicare, to boot, have not been able to agree on paying for Besremi, which has reached about $120,000 in cost. The clinic wanted to inject me until my dose stabilized; Medicare says patients MUST self inject. I am of course lost in the middle of this, with no written assurances that I am not "broke". My local hema/onc doc just says: people your age (65) usually just take chemo (HU), but I do not want it. I will talk to the Mayo doc I saw on zoom in December, to see what else I might do as the blood counts begin to go haywire again. I've tried some Chinese herbs for liver detox; taking some milk thistle seed tea occasionally too. Daily aspirin 'natch.
I've ordered a SUP board for summer "coping skills" and a sun protective shirt. I'll either drown or have fun, I figure. (Don't worry, I'll wear a life vest!)

About sleep apnea, I (who have PV) did the full fledged test in the clinic overnight, as they said the at-home was less reliable. The diagnosis was NO sleep apnea, though I snore and experience hours of insomnia quite a lot. I also do not have restless leg syndrome, my oxygen level was fine, I only paused between breaths one time an hour. So no explanation for hematocrit levels or insomnia. CO2 was normal as well. (I'll tell ya: It was really hard to sleep in that unfriendly, alien setting with fluorescent light creeping under the door and strapped up in cords.) Anyhow, I guess I had to be tested, just in case. PeggySue, I also have woken gasping --and shaking, but only twice, when I was face down in a pillow. This was really odd and spooky for me, and unexplained by clinic test personnel. I know my blood counts were much worse when it happened, and I was stressed by having to go on meds, and by the whole MPN circus of worries. By the way, I was on Besremi for a few months, and it brought the counts way down, but also brought on malaise, etc. Then Medicare and the clinic began dueling about the expense, so I said I'm off that stuff until they can tell me the cost to me. Also, my liver enzymes soared , so the doctor said he'd back off meds for a while. He is old fashioned, tho a youngish man, and said, basically, that people my age (65) are usually on HU, but he understood (hmmm...) about me hoping for some molecular remission on Besremi. Best of luck to us all!

Thank you for your encouragement! It is very scary being diagnosed with something so rare and then watching your blood tests go up and down for months. Still trying to get my HU dosage right but I try to stay positive and grateful that the meds do do their job. I’m a 56 yr old female was has never had any health issues or even any daily meds until now so this was a shocker!

Hello, have just read read posts about sleep apnea. I have had PV with JAK2 for six years. phlebotomies, Hydrea, now Jakafi have managed it and life is enjoyable. I am scheduled for sleep test May 28 and am very curious to see how sleep disorders may affect this condition. I have read many reports that it does have a effect. Anyone new to PV/ JAK2 keep positive it takes time to adjust meds and outlook but it can be very manageble.

If you wake up gasping, that can a sign of sleep apnea. An Overnight oximetry test is super easy and very inexpensive for a doctor to order. It might be worth talking to your doctor about the possibility. I had no idea the connection with SA sleep apnea and the possible rise in hemoglobin and hematocrit. I do hope you find the cause soon so that you can start feeling healthy again. Let me know what you find out, ok?