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Jakavi
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Anyone on Navitoclax ABT-263 study medication with Jakafi?
Anyone with myelofibrosis on the Navitoclax ABT-263 study medication with Jakafi that would like to share information. I have been on both medications since February with some luck. Have been stabilized after failing with Jakafi but that about it for now.
Anyone with myelofibrosis on the Navitoclax ABT-263 study medication with Jakafi that would like to share information. I have been on both medications since February with some luck. Have been stabilized after failing with Jakafi but that about it for now.
Boriqua
in
MPN Voice
5 years ago
Extensive body heat.
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Boriqua
in
MPN Voice
5 years ago
Stem cell transplant for Myelofibrosis
I'd been on
Jakavi
for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats but nothing else improved. Overall I felt I was becoming gradually less well, with both quality of life and life expectancy decreasing.
I'd been on
Jakavi
for a year and it had ceased to help. I then went onto the Pacritinib trial which curtailed night sweats but nothing else improved. Overall I felt I was becoming gradually less well, with both quality of life and life expectancy decreasing.
Dodders
in
MPN Voice
5 years ago
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New meds for Myelofibrosis
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/
Cja1956
in
MPN Voice
5 years ago
Christmas message 2019 from the team at MPN Voice
numerous surveys, your contribution to these surveys does make a difference, and this year especially with the survey for patients and carers we asked you to complete to help us formulate the responses for the SMC (Scottish Medicines Consortium) submission regarding the prescribing of Ruxolitinib (
Jakavi
numerous surveys, your contribution to these surveys does make a difference, and this year especially with the survey for patients and carers we asked you to complete to help us formulate the responses for the SMC (Scottish Medicines Consortium) submission regarding the prescribing of Ruxolitinib (
Jakavi
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Was my Jakafi dosage lowered inappropriatelyand need to be raised?
I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down. Now I feel so much heat in my body that I can't tolerate it anymore feel like I am burning
I have stage 3 myelofibrosis, I was on 20mg of Ruxolitinib signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my ruxolitinib to 10 mg cause my platelets went down. Now I feel so much heat in my body that I can't tolerate it anymore feel like I am burning
Boriqua
in
MPN Voice
5 years ago
Prefibrotic MF
So, I finally had my appointment with my hematologist to diagnose me after all my test the last two weeks. She says my ET has progressed to prefibrotic MF. She starting me on EPO injections every two weeks to try to bring up my red blood cells and continuing to take hydroxy and Jakafi. I’m a little nervous
So, I finally had my appointment with my hematologist to diagnose me after all my test the last two weeks. She says my ET has progressed to prefibrotic MF. She starting me on EPO injections every two weeks to try to bring up my red blood cells and continuing to take hydroxy and Jakafi. I’m a little nervous
Cja1956
in
MPN Voice
5 years ago
CURCUMIN? – IS IT THE NEXT BEST THING...?
Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & friends... Thought that you might all enjoy a quick scan of this article on Curcumin, that seems to suggest that its powers might be just what the Pharmacist decided not to order... because it is possible much less expensive
Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am Hey all my MPN colleagues & friends... Thought that you might all enjoy a quick scan of this article on Curcumin, that seems to suggest that its powers might be just what the Pharmacist decided not to order... because it is possible much less expensive
socrates_8
in
MPN Voice
5 years ago
NEW HOPE FOR AML...
Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This article is a tad tough to read through because of all the terminologies (jargon) used etc... However, it is not all that difficult to follow the gist of these findings if one treats it more like an analogy of some mystery and
Post by MPN-MATE Admin » Wed Sep 25, 2019 2:05 am Hey everyone... :-) This article is a tad tough to read through because of all the terminologies (jargon) used etc... However, it is not all that difficult to follow the gist of these findings if one treats it more like an analogy of some mystery and
socrates_8
in
MPN Voice
5 years ago
Flu vaccine while taking 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
Has anyone here gotten the flu vaccine this year while on 20mg Jakafi
rkhabtec
in
MPN Voice
5 years ago
MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)
Ruxolitinib (
Jakavi
) is not approved by NICE in England for PV. Ruxolitinib (
Jakavi
) is a treatment for PV patients who have failed or are intolerant of first line therapy with Hydroxycarbamide (Hydrea or Hydroxyurea).
Ruxolitinib (
Jakavi
) is not approved by NICE in England for PV. Ruxolitinib (
Jakavi
) is a treatment for PV patients who have failed or are intolerant of first line therapy with Hydroxycarbamide (Hydrea or Hydroxyurea).
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Help with anemia
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?
Jerrymohler
in
MPN Voice
5 years ago
Options when MF is advanced
I am on 5mg
Jakavi
twice a day, which is keeping my spleen size down. My appetite is often lacking and I have lost 7Kg in the last 6 months. I am trying to find a positive to concentrate on but I don't know of any new treatment options. Can anyone see a comeback from this position?
I am on 5mg
Jakavi
twice a day, which is keeping my spleen size down. My appetite is often lacking and I have lost 7Kg in the last 6 months. I am trying to find a positive to concentrate on but I don't know of any new treatment options. Can anyone see a comeback from this position?
47Robert
in
MPN Voice
5 years ago
Shortness of breath
Hello, all, As some of you know, I’ve had ET for 11 years which progressed to PV about 3 years ago. I’ve always had shortness of breath when laying down but now it seems to be worsening, starting earlier in the evening and causing me to have trouble sleeping. I started anagrelide about 3 weeks ago, in
Hello, all, As some of you know, I’ve had ET for 11 years which progressed to PV about 3 years ago. I’ve always had shortness of breath when laying down but now it seems to be worsening, starting earlier in the evening and causing me to have trouble sleeping. I started anagrelide about 3 weeks ago, in
Cja1956
in
MPN Voice
5 years ago
Results from hematologist
Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi and baby aspirin as I have PV. My platelets stayed the same, 668,000, but my rdw has increased to 30.4, which seems really high to me. My HGB
Hello, all. Yesterday I had my six week check up with my hematologist. He had taken me off of hydroxyurea last time because of anemia. I was just taking Jakafi and baby aspirin as I have PV. My platelets stayed the same, 668,000, but my rdw has increased to 30.4, which seems really high to me. My HGB
Cja1956
in
MPN Voice
5 years ago
Myelofibrosis
I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?
I have stage two MF. 72 years old. Live in California. They want to put me on JAKAFI. Anybody else out there in my situation?
Jerrymohler
in
MPN Voice
5 years ago
Kidney infection and jakafi
Hello, all, So this past weekend I went to the emergency room because of severe lower back pain. It came on suddenly two nights before but I was in agony Saturday night. It turned out I had a UTI which had traveled to my kidney. I read on line that UTIs are one of the side effects of jakafi. Has anyone
Hello, all, So this past weekend I went to the emergency room because of severe lower back pain. It came on suddenly two nights before but I was in agony Saturday night. It turned out I had a UTI which had traveled to my kidney. I read on line that UTIs are one of the side effects of jakafi. Has anyone
Cja1956
in
MPN Voice
5 years ago
Indigestion and Jakavi?
12 weeks into
Jakavi
treatment I’m now experiencing very uncomfortable indigestion under my left side ribs. Is this a common problem?
12 weeks into
Jakavi
treatment I’m now experiencing very uncomfortable indigestion under my left side ribs. Is this a common problem?
Patchworklife
in
MPN Voice
5 years ago
Good news!
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts
Cja1956
in
MPN Voice
5 years ago
I’ve had Polycythemia Vera for 10 years. Dr. suspects it is turning into Myleofibrosis
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Good morning. I was diagnosed about 10 years ago with Polycythemia Vera. I am Jak2 positive. I was prescribed hydroxyurea and one low-dose aspirin a day. I also had phlebotomies when my hematocrit was over 42. Recently my hematologist felt like my polycythemia vera May be changing into Myleofibrosis.
Cknight6
in
MPN Voice
5 years ago
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