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ET management, Is anyone here taking Jakafi or Pegasus?

Posted by lynnevb @lynnevb, Jan 24 1:38pm

Hello Everyone,
I am 69 yo and I have had ET for 21 years. I am triple negative (NO JAK2, CALR, MPL ). I have been on Hydrea (plus aspirin) for about 10 years. One of my oncologists has mentioned that I may want to consider Pegasys or Jakafi instead of Hydrea.
Does anyone take these meds for ET?
All the best to everyone in this group and I hope to hear from you.

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jjdownes01 | @jjdownes01 | Jan 25 10:55am

Lynnevb,
I have been taking jakafi for almost two years with no side effects.I was diagnosed with polycythemia vera 3 years ago at age 76. After moving to Pa. in2022, my hematologist at Penn recommended switching from hydroxy. The jakafi can be very expensive, but my local hematologist was able to get my prescription for a $10 copay per month. My blood counts are all within normal limits and the hope is that there will be no evidence of leukemia going forward. JJD

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1 reply
docoltun | @docoltun | Jan 25 5:03pm

Just talked with husband's oncologist (other issues) who told me he has very few patients taking anagrelide for ET as it may have serious side effects including arythimia and something about legs. He does offer jakafi which has had considerable acceptance rates. So, I'll stop yapping about my success with Agrylin (original drug) or anagrelide!! Good hearing about all those variations with blood disorders!!

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johngrudnowski | @johngrudnowski | Jan 25 8:39pm

I'm new to ET and been on hydrea for ~3.5 weeks now. limited side effects but also platelets still at 500. I've been reading about the other meds and would REALLY love to hear more stories. I'm planning to speak with my doctor on Feb 8th about this as well and will report back but in the meantime any info would be amazing. It seems to me that Hydrea is tried, true and cheap which makes it easy to recommended.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 4 2:45pm

@lynnevb and everyone, you may also be interested in these existing related discussions:

- New to Pegasys for ET - advice please!
https://connect.mayoclinic.org/discussion/new-to-pegasus-advice-please/
- Has anyone had experience with Jakafi?
https://connect.mayoclinic.org/discussion/has-anyone-had-experience-with-jakafi/
- Essential Thrombocytosis - what's your experience with Jakifi?
https://connect.mayoclinic.org/discussion/essential-thrombocytosis/

Lynne, did your oncologist mention why they are recommending to switch now?

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1995victoria | @1995victoria | Feb 5 10:28am
In reply to @johngrudnowski "I'm new to ET and been on hydrea for ~3.5 weeks now. limited side effects but..." + (show)
@johngrudnowski

I'm new to ET and been on hydrea for ~3.5 weeks now. limited side effects but also platelets still at 500. I've been reading about the other meds and would REALLY love to hear more stories. I'm planning to speak with my doctor on Feb 8th about this as well and will report back but in the meantime any info would be amazing. It seems to me that Hydrea is tried, true and cheap which makes it easy to recommended.

Jump to this post

I've been on HU for 3 years, first year platelets up and down, finally settle in after year on HU. Mine started over 1,000, now in 300 range. My Dr said can vary from am to pm, not to get too hung up on numbers as long as it's working.

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mamsgirl1998 | @mamsgirl1998 | Feb 5 6:54pm
In reply to @jjdownes01 "Lynnevb, I have been taking jakafi for almost two years with no side effects.I was diagnosed..." + (show)
@jjdownes01

Lynnevb,
I have been taking jakafi for almost two years with no side effects.I was diagnosed with polycythemia vera 3 years ago at age 76. After moving to Pa. in2022, my hematologist at Penn recommended switching from hydroxy. The jakafi can be very expensive, but my local hematologist was able to get my prescription for a $10 copay per month. My blood counts are all within normal limits and the hope is that there will be no evidence of leukemia going forward. JJD

Jump to this post

Hello, I heard the Jakafi is really expensive. I am happy that you are able to get it and that it is working for you.

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