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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: Jan 17 6:39pm | Replies (14)Comment receiving replies
@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently very unusual, I was on 300 c aranesp injection once every three weeks and 150 interferon injection and jakofi 5 mg in morning and 2.5 in evening..this continued for several months and successfully reduced my platelets and my haemaglobin came up to almost normal.. unfortunately I then started to get severe headaches and generally felt unwell so was taken off the interferon and put on 500 aranesp injection and jakofi 5mg morning and night...my last visit the platelets had gone back up and haemaglobin had dropped so new medication doesn't seem to be doing the job tho maybe early days. I may suggest going back on the interferon injection as it seemed to work despite side affects. I suffer with severe tiredness which is most frustrating, am grand sitting all day but that is not living...not sure if this is of any interest..good luck with your treatment
Replies to "@drbart86 hi, I was diagnosed with two mutations in the bone marrow Jak2 and Calr, apparently..."
@cathy8
It is interesting for me to hear that you have both CALR and Jak2. I was initially diagnosed with ET CALR mutation in 2022. Last year my oncologist left, so I reached out to the Mayo in Phoenix and was accepted as a patient. After running tests on me, my oncologist told me I have Jak2. On my next appointment, they will test the proportion of mutation. From the start I have been on small dosage of Anagrelide. At first I had heart palpitations, but after a short time no longer experienced that, no other side effects, and has brought my platelets down to 383 from a high of 600. My oncologist at the Mayo will be switching me to Hydroxyura 500 mg 3 x week. (Less long term side effects?) I hope you will get past feeling severely tired - that is a difficult way to spend every day.
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@cathy8 So far I was on HU for about 3 years before I had issues then have switched to Jakafi 10 mg 2X/d and all the time with ld aspirin. I has held platelets "steady" but above normal, but nothing that the doctors I have consulted with are concerned with at this point as I have not had any clotting indications. Biggest challenge has not been the platelets per se, but the symptom load , mainly fatigue, headaches, abdominal, etc. We have discussed Besremi, but maybe another time. I have been lucky as live in a location that has a great MPN specialist and am considering a move, also near a MPN specialist, that I have consulted and also really like.
good luck with your treatments as well.