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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
5 years ago
What is "palliative care"?
Hi all, Charlotte from
Leukaemia
Care here. I'm doing a bit of research on palliative care and I was surprised at what I found (I won't explain why as it may spoil the point of this question!) So I'm curious.
Hi all, Charlotte from
Leukaemia
Care here. I'm doing a bit of research on palliative care and I was surprised at what I found (I won't explain why as it may spoil the point of this question!) So I'm curious.
KnitEatCrochetRepeat
Patient Advocate
in
Leukaemia CARE
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
5 years ago
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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
5 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
5 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
5 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
5 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
5 years ago
Carer's Rights day
Hi all, It is Carer's Rights Day on the 30th of November and we at
Leukaemia
Care would love to hear from anyone caring for someone with
leukaemia
.
Hi all, It is Carer's Rights Day on the 30th of November and we at
Leukaemia
Care would love to hear from anyone caring for someone with
leukaemia
.
KnitEatCrochetRepeat
in
CLL Support
6 years ago
Carer's Rights Day
Hi all, It is Carer's Rights Day on the 30th of November and we at
Leukaemia
Care would love to hear from anyone caring for someone with
leukaemia
.
Hi all, It is Carer's Rights Day on the 30th of November and we at
Leukaemia
Care would love to hear from anyone caring for someone with
leukaemia
.
KnitEatCrochetRepeat
Patient Advocate
in
Leukaemia CARE
6 years ago
Ibrutinib plus obinutuzumab versus chlorambucil plus obinutuzumab in first-line treatment of chronic lymphocytic leukaemia (iLLUMINATE):
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30788-5/fulltext
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30788-5/fulltext
Myrddin
in
CLL Support
5 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
5 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
5 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
5 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
5 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
Patient Advocate
in
Leukaemia CARE
5 years ago
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
5 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
5 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
5 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
5 years ago
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