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Polycythemia and Jakafi
I have had ET for 13 years and then PV for a year. I am a 74 YO white male. I have been taking 1000mg of hydra every day for 14 years. I got some bad mouth sores and my doctor put me on Jakafi. My CBC showed platelets at 340 10(3), White cells at 14.1 10(3), and RBC at 4.31 10(6) when I started 10mg/
I have had ET for 13 years and then PV for a year. I am a 74 YO white male. I have been taking 1000mg of hydra every day for 14 years. I got some bad mouth sores and my doctor put me on Jakafi. My CBC showed platelets at 340 10(3), White cells at 14.1 10(3), and RBC at 4.31 10(6) when I started 10mg/
ccsial
in
MPN Voice
6 years ago
What is the relevance of "Atypical Lymphocyte count"
The US Veterans Administration has recently added the parameter called "atypical lymphocyte count" to my periodic CBC blood test. I have CLL currently on a w & w protocol. My last blood test reported a WBC of 17,310/uL and my absolute lymphocyte count was 6,060/uL and my " lymphocyte count plus
The US Veterans Administration has recently added the parameter called "atypical lymphocyte count" to my periodic CBC blood test. I have CLL currently on a w & w protocol. My last blood test reported a WBC of 17,310/uL and my absolute lymphocyte count was 6,060/uL and my " lymphocyte count plus
markjeep51
in
CLL Support
6 years ago
I'm new to Essential Thrombocythemia
Is there anyone out there to talk about ET experience, doubts and futures? I was diagnosed this summer but I've probably had it at least 2 years since bleeding symptoms first attracted attention. I'm a CALR mutation and taking hydroxycarbamide/hydroxyurea. I find researching it really interesting and
Is there anyone out there to talk about ET experience, doubts and futures? I was diagnosed this summer but I've probably had it at least 2 years since bleeding symptoms first attracted attention. I'm a CALR mutation and taking hydroxycarbamide/hydroxyurea. I find researching it really interesting and
Jdogs
in
MPN Voice
6 years ago
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“Closing One Door, Opening Another” by Dr. Brian Koffman from CLL Society
Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote himself full time to the CLL community. Below is his touching letter he posted on his CLLSociety blog: Today was a monumental day for me. A huge transition
Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote himself full time to the CLL community. Below is his touching letter he posted on his CLLSociety blog: Today was a monumental day for me. A huge transition
Anastasia1
in
CLL Support
6 years ago
What a year - and some good news to end it
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was diagnosed with ET, then MF (despite having no fibrosis but I didn’t realise this made no sense at the time) and then imminent AML (despite having no
Timjonze
in
MPN Voice
6 years ago
CLL
Diagnosed On Dec 11 2017 , I go every 3 months for blood work,My WBC is always out of range 16.7 asof latest one, and my lymphocytes are always out of range as well 11.2 latest one, I have smudge cells present , Today was first time my MCH was low , now outrageously low but low. It scared me , I know
Diagnosed On Dec 11 2017 , I go every 3 months for blood work,My WBC is always out of range 16.7 asof latest one, and my lymphocytes are always out of range as well 11.2 latest one, I have smudge cells present , Today was first time my MCH was low , now outrageously low but low. It scared me , I know
Shellcanada71
in
CLL Support
6 years ago
CLL Society Alert -USA Patient Support Groups & Educational Meetings - Free 2nd Opinions by Video conference & Financial Assistance
See http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=b6383392-2aad-42b8-b327-03126332eac0 for a more readable image with active links. Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote
See http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=b6383392-2aad-42b8-b327-03126332eac0 for a more readable image with active links. Dear Friends and Supporters of the CLL Society, This week Dr. Koffman shares a huge change in his life as he retires from family medicine to devote
lankisterguy
Volunteer
in
CLL Support
6 years ago
Daily Smokers Have a More than 3 Times Increased Risk for MPN
Daily Smokers Have a More than 3 Times Increased Risk for MPN NOVEMBER 28, 2018 Einav Keet The results of a new study conducted by investigators in Denmark suggest that smoking may be a risk factor for the development of myeloproliferative neoplasms (MPN), a rare group of blood cancers. Chronic myeloproliferative
Daily Smokers Have a More than 3 Times Increased Risk for MPN NOVEMBER 28, 2018 Einav Keet The results of a new study conducted by investigators in Denmark suggest that smoking may be a risk factor for the development of myeloproliferative neoplasms (MPN), a rare group of blood cancers. Chronic myeloproliferative
shiftzz
in
MPN Voice
6 years ago
PV diet and excercise in addition to hydroxycarbamide
I had my bloods checked yesterday and my platelets have increased dramatically over the last few months. I was told by my haematologist that I would have to increase the dosage I take of hydroxycarbamide. I said I really didn’t want to take anymore tablets and said would it not help if I excercised more
I had my bloods checked yesterday and my platelets have increased dramatically over the last few months. I was told by my haematologist that I would have to increase the dosage I take of hydroxycarbamide. I said I really didn’t want to take anymore tablets and said would it not help if I excercised more
Hughley
in
MPN Voice
6 years ago
Tick vaccination
Hello After Venetoclax and Obinutuzumab I am mrd- both in PB and marrow. I would like to get vaccination against ticks (TBE). Has anybody experience if it will work in CLL patients. Many thanks Reinhard
Hello After Venetoclax and Obinutuzumab I am mrd- both in PB and marrow. I would like to get vaccination against ticks (TBE). Has anybody experience if it will work in CLL patients. Many thanks Reinhard
Reinhard
in
CLL Support
6 years ago
Chemo-Free Treatment Best Option for CLL Patients Under 70
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
There is good news in the advancement of chemo-free approaches to managing chronic lymphocytic leukemia, and I am thrilled to share it with you. Results of the phase III ECOG trial found that the combination of ibrutinib (Imbruvica) plus rituximab (Rituxan) came out superior to the chemotherapy and
GlennSabin
in
CLL Support
6 years ago
London Forum Follow Up
Didn’t get 100% success at last night’s London forum although to be fair my Where’s Wally shirt was hidden under my coat for some of the time and I do look scary! Nice to meet Alison, Paivi, Susana, Melanie, Ala and Katherine (again!) as well as catch up with Pauline B who has been an MF-er for several
Didn’t get 100% success at last night’s London forum although to be fair my Where’s Wally shirt was hidden under my coat for some of the time and I do look scary! Nice to meet Alison, Paivi, Susana, Melanie, Ala and Katherine (again!) as well as catch up with Pauline B who has been an MF-er for several
MFBMT2011
in
MPN Voice
6 years ago
cancerconcern1
hi Cancerconcer1 i know you can by co/codmal 8/500mg over the counter at a chemist try taking them but you may find you get constipation but they are a good painkiller a bottle of lactulose will help with constipation if these do not work ask for a referral to see a Neurologist as you seem to be going
hi Cancerconcer1 i know you can by co/codmal 8/500mg over the counter at a chemist try taking them but you may find you get constipation but they are a good painkiller a bottle of lactulose will help with constipation if these do not work ask for a referral to see a Neurologist as you seem to be going
Scottishterrier
in
MPN Voice
6 years ago
Jakafi side effects
Hi everyone, I’m 62, diagnosed w et about 12 years ago, pv a few years later. Terrible itching, esp in high temperatures, was driving me crazy. I got on Jakafi for the itching, and that’s been great. But my immune system has gone to hell—weird infections, bimonthly bronchitis, painful heel bursitis
Hi everyone, I’m 62, diagnosed w et about 12 years ago, pv a few years later. Terrible itching, esp in high temperatures, was driving me crazy. I got on Jakafi for the itching, and that’s been great. But my immune system has gone to hell—weird infections, bimonthly bronchitis, painful heel bursitis
Chicagopv
in
MPN Voice
6 years ago
CLL Education Program w Adrien Wiestner in Baltimore
I was reading my Sunday newspaper this morning and saw an add from the Leukemia & Lymphoma Society. Adrian Wiestner, MD, PhD who is the senior investigator at the National Institute of Health along with Susan Soto, research nurse will be presenting an Education Program on CLL in Pikesville which is in
I was reading my Sunday newspaper this morning and saw an add from the Leukemia & Lymphoma Society. Adrian Wiestner, MD, PhD who is the senior investigator at the National Institute of Health along with Susan Soto, research nurse will be presenting an Education Program on CLL in Pikesville which is in
PSP52
in
CLL Support
6 years ago
Hydroxycarbamide
My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using vivisection to bring his red blood count down prior to this. This is all so confusing and scary for us. Any advise or help would be very much appreciated
My partner has just started on 500mg hydroxycarbamide. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using vivisection to bring his red blood count down prior to this. This is all so confusing and scary for us. Any advise or help would be very much appreciated
Dennykev
in
MPN Voice
6 years ago
FYI/Trial data to be discussed this weekend
In CLL, there are multiple trials of interest being presented with the potential to have an impact on practice, including the phase III Alliance North American Intergroup Study A041202 exploring ibrutinib alone or in combination with rituximab vs standard chemoimmunotherapy with bendamustine plus rituximab
In CLL, there are multiple trials of interest being presented with the potential to have an impact on practice, including the phase III Alliance North American Intergroup Study A041202 exploring ibrutinib alone or in combination with rituximab vs standard chemoimmunotherapy with bendamustine plus rituximab
Newchallnge
in
CLL Support
6 years ago
ASH 2018 and More
Hi, This is the most exciting, hectic and rewarding time of the year for the CLL Society, as we are soon headed to ASH 2018 in San Diego to bring back the information that will make you a smarter patient. Every year we are filled with amazement and gratitude for the unstoppable energy expended by clinical
Hi, This is the most exciting, hectic and rewarding time of the year for the CLL Society, as we are soon headed to ASH 2018 in San Diego to bring back the information that will make you a smarter patient. Every year we are filled with amazement and gratitude for the unstoppable energy expended by clinical
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Good news to finish the week on
In addition, these cancers can progress to more advanced forms of disease, including
acute
leukaemia
, that have a poor outlook. Currently, myeloproliferative neoplasms are divided into three clinical types, in a system dating from the 1950s.
In addition, these cancers can progress to more advanced forms of disease, including
acute
leukaemia
, that have a poor outlook. Currently, myeloproliferative neoplasms are divided into three clinical types, in a system dating from the 1950s.
Ovingite
in
MPN Voice
6 years ago
PV stinging itch and Ruxolitinib
Hi all I really can’t wait to share how Rux has changed by daily life in less than a week. I was approved for Ruxolitinib and started taking it a week ago. I feel fantastic - the itch has gone. I am generally warmer - what a wonder this is. I will have my bloods done on 5th and just hope they are
Hi all I really can’t wait to share how Rux has changed by daily life in less than a week. I was approved for Ruxolitinib and started taking it a week ago. I feel fantastic - the itch has gone. I am generally warmer - what a wonder this is. I will have my bloods done on 5th and just hope they are
S031251
in
MPN Voice
6 years ago
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