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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
Managing Chronic Lymphocytic Leukemia and Its Complications Part I Thursday, November 8, 2018
Requests must be received within two weeks of the live program. ________________________________________ Managing Chronic
Lymphocytic
Leukemia
and Its Complications Part I of Life with Chronic
Lymphocytic
Leukemia
(CLL) Thursday, November 8, 2018 1:30 - 2:30 PM Eastern Time ____________________
Requests must be received within two weeks of the live program. ________________________________________ Managing Chronic
Lymphocytic
Leukemia
and Its Complications Part I of Life with Chronic
Lymphocytic
Leukemia
(CLL) Thursday, November 8, 2018 1:30 - 2:30 PM Eastern Time ____________________
lankisterguy
Volunteer
in
CLL Support
6 years ago
“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
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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
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 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
AML patients in Australia today learn midostaurin (Rydapt®) will be available under new PBS listing. Press Release below.
Media Release For media queries, please contact media@leukaemia.org.au New PBS listing vital to Australians living with Acute Myeloid Leukaemia (AML) Leukaemia Foundation CEO Mr Bill Petch has today supported the Health Minister Mr Greg Hunt’s Pharmaceuticals Benefits Scheme (PBS) listing announcement
Media Release For media queries, please contact media@leukaemia.org.au New PBS listing vital to Australians living with Acute Myeloid Leukaemia (AML) Leukaemia Foundation CEO Mr Bill Petch has today supported the Health Minister Mr Greg Hunt’s Pharmaceuticals Benefits Scheme (PBS) listing announcement
Hidden
in
MPN Voice
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
OncLive Videos of CLL Expert Doctors on New Treatments
ONCLive CLL eNews Combination Trials Signal Next Wave of Treatment for CLL Within the last decade, the FDA has approved 8 new agents for the treatment of patients with chronic
lymphocytic
leukemia
.
ONCLive CLL eNews Combination Trials Signal Next Wave of Treatment for CLL Within the last decade, the FDA has approved 8 new agents for the treatment of patients with chronic
lymphocytic
leukemia
.
lankisterguy
Volunteer
in
CLL Support
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
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
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
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
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
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
Watch & Wait -- Online Webinar Nov 28, 2018 - Patient Power - Dr. Philip Thompson & Dr. Jackie Broadway-Duren
Register now- https://www.patientpower.info/nov28#register Many CLL patients wonder: “What is watch and wait? Why am I not being treated immediately after my diagnosis?” On November 28 at 1 PM CT (2 PM ET, 11 AM PT), join Patient Power and CLL Global Research Foundation for a one-hour webinar, “Understanding
Register now- https://www.patientpower.info/nov28#register Many CLL patients wonder: “What is watch and wait? Why am I not being treated immediately after my diagnosis?” On November 28 at 1 PM CT (2 PM ET, 11 AM PT), join Patient Power and CLL Global Research Foundation for a one-hour webinar, “Understanding
lankisterguy
Volunteer
in
CLL Support
6 years ago
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