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JAK2 Essential Thrombocythemia (ET) Treatment
I recently came upon a fairly recent article about the monoclonal antibody INCA44989 treatment for JAK2 ET. It supposedly has a roughly 70% positive response rate, and with a low toxicity profile, meaning minimal side affects. This is great news for all of us who have been afflicted with this unfortunate blood disorder.
I searched for a discussion about this but nothing came up. I'm wondering if anyone reading this may have some experience or information on this subject.
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@gigi05
Wondering if you're taking a daily antihistamine, gigi05?
If so, I'll pass on a tip from my Nurse Practitioner: Take the pill at night, then boost its efficacy with a Flonase-type product in the morning.
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3 Reactions@eileen11108 I am 77 and have only started on HU since Feb, I am on 1000 per day and as time has gone on I am suffering from stiff and sore joints so I am blaming HU. I will see my haematologist next week and maybe I can lower the dose. But I also have melanoma cancer so as my oncologist says I am a complex patient! There are no answers for some things and we just have to do the best we can.
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4 Reactions@janemc Interesting! I recently started feeling like I have some seasonal allergies, but as I am new to that, I had not even thought of antihistamines. I will try this. Great suggestion. And, curious, what made you even think of this?
@gigi05
nohrt4me gets all the credit!
I started following her advice on this some time ago.
Our ET platelets are so misshapen that they can trigger our immune response.
Lucky us!!
@janemc @nohrt4me Thank you both! and just try any anti histamine, or is there one you suggest? Never taken one yet.
@gigi05 I start Peg next week, waiting on insurance. I will be switching to Besremi but it takes a lot longer to get insurance approval and my platelets have really spiked after stopping anagrelide. My MPN doc said I’m at high risk for a stroke or heart attack even though I am in very good shape and perfect weight. I have Jak2+ ET.
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3 Reactions@gigi05
With good results, I took generic loratadine (the active ingredient in Claritin) for more than a year.
This spring, my breathing problems increased, and my Nurse Practitioner suggested trying a different antihistamine.
So now I'm taking generic cetirizine hydrochloride (the active ingredient in Zyrtec).
If you are less of a penny-pincher than I, of course you could just take the brand name tablets!
Be aware, if you're already suffering from allergy symptoms, it can take days or even weeks for a daily antihistamine to become effective.
Hope this helps you as much as it helps me! Thanks again to nohrt4me!
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2 Reactions@mdramsey48 Sorry to hear it. There seem to be so many of us, in good shape otherwise, perfect weight, etc, and then boom this diagnosis. And good for you, because that can only help. Having your MPN doc say that you are at high risk for stroke or heart attack must be hard to hear. At the same time, my platelets are not that high yet, and my MPN doc also says that I am high risk. So, I try to focus on what I can do, manage any 'downstream' issues that crop up (like now getting allergies), and also try to manage my mind around all of this -the latter can be harder than it seems, and I'm not even prone to anxiety!
@gigi05 interesting! I also have allergies but according to an allergist, I am not allergic to anything. I have an epi pen because I react to stings, iodine, shellfish, and poison ivy. I was also dx with breast cancer last September 25 after my ET dx in August 25.