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Jakavi
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Anyone with Post ET/MF & Budd Chiari?
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
I'm 50 and was diagnosed with ET at 22. I took Hydroxyurea and Agreline (sp?) early on but after several DVT's, embolism and PE's I was put on Warafin and Allopurinol and basically monitored until my MF symptoms got "bad enough to treat". About 15 years ago I had blood clots form in my liver and 7
KADS
in
MPN Voice
6 years ago
Problems with the sun/heat
I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea to interferon then pegasys and now jakafi, I just seem to get really sick and have really bad headaches that last for days after being out say fishing or just going
I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea to interferon then pegasys and now jakafi, I just seem to get really sick and have really bad headaches that last for days after being out say fishing or just going
Rastavapa
in
MPN Voice
6 years ago
Good report on Ruxolitinib
https://globenewswire.com/news-release/2018/06/15/1525038/0/en/Novartis-study-of-real-world-data-concludes-
Jakavi
-is-associated-with-a-reduction-in-risk-of-death-and-dangerous-blood-clots-for-patients-with-rare-blood-cancer.html Spotted this on Facebook and nice to see a good report for a change especially
https://globenewswire.com/news-release/2018/06/15/1525038/0/en/Novartis-study-of-real-world-data-concludes-
Jakavi
-is-associated-with-a-reduction-in-risk-of-death-and-dangerous-blood-clots-for-patients-with-rare-blood-cancer.html Spotted this on Facebook and nice to see a good report for a change especially
Graham7694
in
MPN Voice
6 years ago
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Spleen size
After several years of stable enlarged spleen it has recently jumped from 16cms to 19cms despite 15mg
Jakavi
twice daily. I am in the process of trying to get Pacritinib trial a bit closer to home but urgently need the next development on the meds scene!
After several years of stable enlarged spleen it has recently jumped from 16cms to 19cms despite 15mg
Jakavi
twice daily. I am in the process of trying to get Pacritinib trial a bit closer to home but urgently need the next development on the meds scene!
beetle
in
MPN Voice
6 years ago
hip replacement with jakafi controlled polycythemia
I am 71 years old. for a year I have had worsening troubles with my hip. I've followed the protocol to heal with physical therapy, shot in hip, RICE etc. Two weeks ago I was told by my orthopedic surgeon that I need a hip replacement since I had a congenital, inherited hip the in need of a change!
I am 71 years old. for a year I have had worsening troubles with my hip. I've followed the protocol to heal with physical therapy, shot in hip, RICE etc. Two weeks ago I was told by my orthopedic surgeon that I need a hip replacement since I had a congenital, inherited hip the in need of a change!
titanswomn
in
MPN Voice
6 years ago
Jakafi scare - MPN Research Foundation reply
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional
Paul123456
in
MPN Voice
6 years ago
Should we be worried about this article in MPN Forum RE. Jakafi drug ????
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article https://mpnforum.com/jakafi-warning-signs/ which I reads today about the trial drug Jakafi, which I currently take? Needless to say, it has
chelsea1
in
MPN Voice
6 years ago
Links to latest research
I thought it would be easier if I grouped all the links I’ve posted into one thread. Imo it’s all encouraging and uplifting. I’ve run out of time to find the link re Graft Host rejection advances, will do so later. Best Paul (Hope all the links open!) Replacing Chemo/Radiation in SCT’s https://med.stanford.edu
I thought it would be easier if I grouped all the links I’ve posted into one thread. Imo it’s all encouraging and uplifting. I’ve run out of time to find the link re Graft Host rejection advances, will do so later. Best Paul (Hope all the links open!) Replacing Chemo/Radiation in SCT’s https://med.stanford.edu
Paul123456
in
MPN Voice
6 years ago
Just stopped fuming!
He replied that he was reducing the dose of
Jakavi
! I then told him that my cholesterol was high after a fasting test and before I had finished the sentence he said that was for my GP to sort out.
He replied that he was reducing the dose of
Jakavi
! I then told him that my cholesterol was high after a fasting test and before I had finished the sentence he said that was for my GP to sort out.
beetle
in
MPN Voice
6 years ago
Fascinating drug comparison table
This has been posted on MPN-Net, not seen it before. Since every specialist seems to have a different viewpoint I’m not sure how reliable it is but definitely food for thought! This Table published by Dr. Hasselbalch earlier this year summarizes the differences between interferon, hydroxyurea, Jakafi
This has been posted on MPN-Net, not seen it before. Since every specialist seems to have a different viewpoint I’m not sure how reliable it is but definitely food for thought! This Table published by Dr. Hasselbalch earlier this year summarizes the differences between interferon, hydroxyurea, Jakafi
Paul123456
in
MPN Voice
6 years ago
Jackifi
Has anyone on here taken Jakafi and if so what results and side effects have you had?
Has anyone on here taken Jakafi and if so what results and side effects have you had?
Murry33
in
MPN Voice
6 years ago
JAK2 questions
Please pardon my ignorance but trying to understand the significance of JAK2. First question is when some posters here say they are JAK2 -ve, does that mean they don’t have the JAK2 mutation? Not some actual -ve variant! Second question is that I assume Jakafi would only be used on JAK2 patients? However
Please pardon my ignorance but trying to understand the significance of JAK2. First question is when some posters here say they are JAK2 -ve, does that mean they don’t have the JAK2 mutation? Not some actual -ve variant! Second question is that I assume Jakafi would only be used on JAK2 patients? However
Paul123456
in
MPN Voice
6 years ago
Back from my trip to SE Asia (brief update)
Hey my fellow MPNers... Some of you might recall that I had decided to try my hand at scuba and do my Open Water Diver's certification when abroad in SE Asia... Well... all did not quite go to plan. Most of the journey over the 3-4 weeks, I was severely fatigued and extremely nauseous. Just prior to
Hey my fellow MPNers... Some of you might recall that I had decided to try my hand at scuba and do my Open Water Diver's certification when abroad in SE Asia... Well... all did not quite go to plan. Most of the journey over the 3-4 weeks, I was severely fatigued and extremely nauseous. Just prior to
socrates_8
in
MPN Voice
7 years ago
Susan 3025
Wondering why in this country that if you work you get less? My grandson had a job and was on his way to marriage and a new home when he became ill with AML Leukemia. He of course lost all of it.. except his new wife. He lived with his parents my daughter and her husband his dad until recently. They
Wondering why in this country that if you work you get less? My grandson had a job and was on his way to marriage and a new home when he became ill with AML Leukemia. He of course lost all of it.. except his new wife. He lived with his parents my daughter and her husband his dad until recently. They
Susan3925
in
MPN Voice
7 years ago
All about me and my Myelofibrosis
About three years ago I was lucky enough to get the drug company to give me
Jakavi
(Ruxolitinib) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
About three years ago I was lucky enough to get the drug company to give me
Jakavi
(Ruxolitinib) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
PeterNB
in
MPN Voice
7 years ago
A bit gloomy
He has lowered my dose of
Jakavi
and reduced the iron chelation protocol (I have very high ferritin from transfusion dependency) in order to help improve my counts.
He has lowered my dose of
Jakavi
and reduced the iron chelation protocol (I have very high ferritin from transfusion dependency) in order to help improve my counts.
beetle
in
MPN Voice
7 years ago
Scuba & MF while on Jakafi?
Hey guys... :) Here's an interesting question for some of you to ponder... I have decided that life might be even shorter than I had originally perceived , due to my MF diagnosis of course. Since having commenced my new fitness regime, my endurance levels have become somewhat better, however, in all
Hey guys... :) Here's an interesting question for some of you to ponder... I have decided that life might be even shorter than I had originally perceived , due to my MF diagnosis of course. Since having commenced my new fitness regime, my endurance levels have become somewhat better, however, in all
socrates_8
in
MPN Voice
7 years ago
Jakavi and Valaciclovir
A couple of months ago my
Jakavi
treatment was reduced down to 5mg bid and the consultant stopped my Valaciclovir anti-viral treatment.
A couple of months ago my
Jakavi
treatment was reduced down to 5mg bid and the consultant stopped my Valaciclovir anti-viral treatment.
crapaud
in
MPN Voice
7 years ago
Can you get back to '100%' after an SCT ?
Firstly the good news, I had an SCT almost 2yrs ago and the worst of my GvHD appears to over with, my medication level is low (
Jakavi
5mg bid) and my blood counts are normal😉 However, I still feel tired, and am trying to shake off the 'achy effects' of long periods of corticoids.
Firstly the good news, I had an SCT almost 2yrs ago and the worst of my GvHD appears to over with, my medication level is low (
Jakavi
5mg bid) and my blood counts are normal😉 However, I still feel tired, and am trying to shake off the 'achy effects' of long periods of corticoids.
crapaud
in
MPN Voice
7 years ago
Minimal Residual Disease or Cure in MPNs? Rationales and perspectives on Combo Therapy with Interferon-alpha2 and Ruxolitinib
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
PVReporter
in
MPN Voice
7 years ago
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