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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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Rux and Hydroxy
I had my haematologist appointment this morning. Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarbamide 500mg each day as well as the Rux 😩 Anyone else taking both? Regards Graham
I had my haematologist appointment this morning. Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarbamide 500mg each day as well as the Rux 😩 Anyone else taking both? Regards Graham
Graham7694
in
MPN Voice
6 years ago
CLL and CFS
I was diagnosed with CLL just over a year ago about a month after another episode of CFS (Chronic Fatigue Syndrome) started. I went on holiday to France and spent two weeks lying on a bed and had to get a wheelchair to get to the plane for my flight home. A year later I started to improve and now, two
I was diagnosed with CLL just over a year ago about a month after another episode of CFS (Chronic Fatigue Syndrome) started. I went on holiday to France and spent two weeks lying on a bed and had to get a wheelchair to get to the plane for my flight home. A year later I started to improve and now, two
shornoff
in
CLL Support
6 years ago
Exercise to cope with leukaemia
Hi all, Another question from me about your experiences. I'm hoping to do a video about experiences of using exercise to cope with a blood cancer journey, whatever stage of the journey you might be at. Would anyone mind sharing their experiences about this? You wouldn't have to be in the video if you
Hi all, Another question from me about your experiences. I'm hoping to do a video about experiences of using exercise to cope with a blood cancer journey, whatever stage of the journey you might be at. Would anyone mind sharing their experiences about this? You wouldn't have to be in the video if you
KnitEatCrochetRepeat
in
Leukaemia Support
6 years ago
Transformation of CLL into prolymphocytic leukaemia
my blood work says that my TLC is 227.9 with Atypical lymphoid cells at 30% , and 65% being prolymphocytes . The rest 5% are Neutrophils. Does it mean my cll decease dx in 2013 transformed into more aggressive subset of CLL , namely pro lymphoccytic leukamea which is hard to treat. My chemo immuno
my blood work says that my TLC is 227.9 with Atypical lymphoid cells at 30% , and 65% being prolymphocytes . The rest 5% are Neutrophils. Does it mean my cll decease dx in 2013 transformed into more aggressive subset of CLL , namely pro lymphoccytic leukamea which is hard to treat. My chemo immuno
venk_46
in
CLL America Support
6 years ago
Reynaud’s Syndrome / Disease in Hands and Feet (Triggered by cold) – Self Help Measures - Discussion Please
I've had mild Reynaud's in the hands for over 10 years, and then worse in the feet and hands since Chemo for
Leukaemia
1st line treatment in 2015. N.B.
I've had mild Reynaud's in the hands for over 10 years, and then worse in the feet and hands since Chemo for
Leukaemia
1st line treatment in 2015. N.B.
Ernest2
in
Scleroderma & Raynaud's UK (SRUK)
6 years ago
Breaking news form ASH conference: looks like Ibrutinib May be better than FCR for some patients
#ASH18 #LBA | A Randomized Phase III Study of Ibrutinib (PCI-32765)-Based Therapy Vs. Standard Fludarabine, Cyclophosphamide, and Rituximab (FCR) Chemoimmunotherapy in Untreated Younger Patients with Chronic Lymphocytic Leukemia (CLL) | #leusm ash.confex.com/ash/2018/webpr…
#ASH18 #LBA | A Randomized Phase III Study of Ibrutinib (PCI-32765)-Based Therapy Vs. Standard Fludarabine, Cyclophosphamide, and Rituximab (FCR) Chemoimmunotherapy in Untreated Younger Patients with Chronic Lymphocytic Leukemia (CLL) | #leusm ash.confex.com/ash/2018/webpr…
Newchallnge
in
CLL Support
6 years ago
Who Gives Care to the Caregiver - Online Free Educational Program by LLS.org The Leukemia & Lymphoma Society
Who Gives Care to the Caregiver - Online Free Educational Program by LLS.org The Leukemia & Lymphoma Society The latest information for patients and caregivers. Healthcare professionals are invited to participate. JOIN US FOR A FREE TELEPHONE/WEB EDUCATION PROGRAM WEDNESDAY November 28, 201812
Who Gives Care to the Caregiver - Online Free Educational Program by LLS.org The Leukemia & Lymphoma Society The latest information for patients and caregivers. Healthcare professionals are invited to participate. JOIN US FOR A FREE TELEPHONE/WEB EDUCATION PROGRAM WEDNESDAY November 28, 201812
lankisterguy
Volunteer
in
CLL Support
6 years ago
'Dulce et Decorum Est' by Wilfred Owen.
Arguably our greatest war poet Wilfred Owen wrote this poem focusing in particular on one moment in the First World War, when Owen and his platoon are attacked with poison gas. ‘Dulce et Decorum Est’ is a studied analysis of suffering and perhaps the most famous anti-war poem ever written. The full title
Arguably our greatest war poet Wilfred Owen wrote this poem focusing in particular on one moment in the First World War, when Owen and his platoon are attacked with poison gas. ‘Dulce et Decorum Est’ is a studied analysis of suffering and perhaps the most famous anti-war poem ever written. The full title
sufferer2
in
Lung Conditions Community Forum
6 years ago
Bpdcn
Hi there, I am new here. I am a carer for a family member. Does anyone know of, or has anyone heard of BPDCN? Blastic plasmacytoid dendritic cell neoplasm (BPDCN), previously known as natural killer (NK) cell leukemia/lymphoma,? My father is taking oral chemotherapy ...anyone know of this?
Hi there, I am new here. I am a carer for a family member. Does anyone know of, or has anyone heard of BPDCN? Blastic plasmacytoid dendritic cell neoplasm (BPDCN), previously known as natural killer (NK) cell leukemia/lymphoma,? My father is taking oral chemotherapy ...anyone know of this?
StefHere
in
Leukaemia Support
6 years ago
Hi Bone Marrow lymphoma cancer
Hi my niece was diagnosed with tjus will Jakafi help her thanks
Hi my niece was diagnosed with tjus will Jakafi help her thanks
rkhabtec
in
MPN Voice
6 years ago
Tisomy 12
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
Dx 203 CLL in Feb 2013,male, living in India, watch and wait till last week. I am Ighv mutated and no Zap 70 and CD 38. My Fish test revealed no genetic deletion Like 17p, 13q, 11q. Due to gradual fall of Hb to 8 and lymphocytes around 100k, I was advised B R chemo immunotherapy and stated on November
venk_46
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
Wife just diagnosed with CLL too!
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
I was diagnosed in 2006 and have been in clinical trial since 2016. My wife was just diagnosed. All sorts of questions: could it be an environmental exposure we shared at some point (married over 49 years)? Some sort of virus that predisposed us? Coincidence? Should our grown children worry? Other
Walt424
in
CLL Support
6 years ago
CAR-T Cell expert Dr. Utkarsh Acharya online; CAR-T Patient Dr. Brian Koffman at CLL Society Support Meetings- Philadelphia & New York City
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
This week there are several opportunities to learn more about CAR-T http://campaign.r20.constantcontact.com/render?m=1120967015548&ca=8ae5639f-9cb3-476f-8278-85bec8eb87ec - Online we hear again from Dr. Utkarsh Acharya on his perspective of caring for CAR-T patients including our own Dr. Koffman. https
lankisterguy
Volunteer
in
CLL Support
6 years ago
Anybody like this?
Platelets transfusion every 10 days. Black or red dots on your skin. Mostly hands and legs. Stool looks like tar when your platelets count gets less than 5. Please reply
Platelets transfusion every 10 days. Black or red dots on your skin. Mostly hands and legs. Stool looks like tar when your platelets count gets less than 5. Please reply
cier04
in
ITP Support Association
6 years ago
Does anyone else have another blood cancer as well as an MPN?
Hi. I’m now nearly two years post diagnosis with MF, and I also have CLL. Chronic lymph.. leukemia ( can never remember, spell or pronounce the L in the middle) CLL to its friends. That means that I get excluded from clinical trials, which is a big downside. I wondered how many other people who use
Hi. I’m now nearly two years post diagnosis with MF, and I also have CLL. Chronic lymph.. leukemia ( can never remember, spell or pronounce the L in the middle) CLL to its friends. That means that I get excluded from clinical trials, which is a big downside. I wondered how many other people who use
Rachelthepotter
in
MPN Voice
6 years ago
fluoride for teeth when on hydroxyurea?
My dentist has recommended that I start using fluoride gel trays for my teeth to protect them while taking the hydroxyurea. Has anyone heard about this? I have Essential Thrombocythemia (high platelets) & as I understand it I will be taking the hydroxyurea for the rest of my life.
My dentist has recommended that I start using fluoride gel trays for my teeth to protect them while taking the hydroxyurea. Has anyone heard about this? I have Essential Thrombocythemia (high platelets) & as I understand it I will be taking the hydroxyurea for the rest of my life.
h2ogal
in
MPN Voice
6 years ago
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