Hope this finds everyone OK. Was officially diagnosed with ET post my BMB in December - although my platelets have been high for about 7 years - at first high 400's; then 500's; then 700's; fairly steady progression to last Aug/Sep at 947..been on aspirin only as luckily I have not had many symptoms, am 52 and no thrombosis history. Did battery of tests in October and found out am Jak2+ as well. My BMB was thoroughly reviewed by a few pathologists (at my insistence as my ongoing Leukocytosis made me think perhaps we are dealing with masked PV) - confirmed ET (for now) - no scarring/fibrosis and blasts <3%. My hemo who is an MPN expert as well is firmly convinced we are dealing with ET for now (he always reminds me that the MPNs are related and sit on a continuum)...
As part of regular follow up - did blood work this week in prep for my next Hemo appt next week. Results were somewhat surprising (and disappointing):
Platelets at 1,401 (wow!) - WBC 14.6 - it would also seem that my kidneys might be affected as things such as Urea, Creatinine, K+ Potassium, Phosphore (B) are higher than normal.
We will see what the hemo says - so far he has been of the belief that if not suffering from many symptoms, that he would prefer the aspirin and watch protocol for now given my lower risk (but that was before the platelets crossed the 1,400 threshold) - I have seen a little bleeding at my gums (tested negative in December for the VWF so still on aspirin) and have had three memorable headaches over past few months (but honestly don't know if they were ET related; regular stress or Corona lockdown related but definitely stronger than headaches I had in past) - no vision problems; no increase in itching; no splenomagoly (self doagnosis
Actually more worried about the Leukocytosis as everything I have read said that persistent high WBC with ET leads to a poorer prognosis..and the kidney thing is weird (LDH was fine btw - in fact all RBC came back in normal ranges as did all other tests)
Thinking given the level of the platelets and the jump they made in a relatively short period of time - he may suggest I go on hydoxyurea..if that's his recommendation then I will follow it (trust him) but was hoping to delay that step for another 10 years (it is fairly standard protocol to begin almost automatically at 60 here)...I know things can change literally overnight but was fairly happy with the BMB results form December but now am worried about the platelet level and jump; the WBC (higher than it has ever been and not feeling as though I am fighting an infection) and the kidney question - just seeing if anyone might have some insight - apologize for the long post.
Thanks!
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Solyesh
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You might want to check out Pegasys as an alternative to Hydroxy. The latest research is very positive and my Hem says it’s as close to a cure as you can get at the moment. Doesn’t work for everyone and not good if you are prone to depression. However, if you follow the various MPN Forums (inc Facebook) you will discover that it has a major fan club!
My only treatment regret is that I wished I’d started it earlier. If you check out my previous posts you will find links to trial results.
Certainly sounds like you are having a time of it! Sorry to hear it is a rough go. We may have to compare notes on the kidney issues as I have had some numbers come back wonkey too (eFGR, Creatinine, Protein, A/G Ratio). We are rerunning the labs to see if is consistent and needs follow up. For sure to follow up yourself ASAP as your body is an integrated system. What is going on in your kidneys could affect hematopoiesis and vice versa.
Paul123456 ic correct in suggesting that HU is not your only option. Many MPN Specialist would recommend PEGylated Interferon over HU, particularly for someone your age. Suggest your review the risk/benefit profile of each of your choices with your MPN Specialist. See Dr, Harrison's How I Treat ET article for how she handles this.
I would add a suggestion that with your platelet levels having spiked so much higher, rerunning the vWB Panel and prothrombin times would be a good idea. The gum bleeding may be nothing more than a side effect of the aspirin, but better safe than sorry. Do note that you can have increased hemorrhaging without it rising to the level of Acquired vWBD. Longer term. also be aware that our response to aspirin gets stronger as we age (hemorrhage risk increases age>60).
No problem re the long post. You have a lot going on. I do help you get the the bottom of it all ASAP. Please post again when you know more. Make the post as long as it needs to be. We are here to listen to and support each other.
Hi Solyesh, sorry you are going through this, I cant be helpful as myself in learning phase and dont have diagnostic yet other than MPN, but I can understand how stressful it is. please keep us posted after you consult with your Dr. Best wishes for you
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