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Standards of Care as defined by UMN doctors
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
Bloodwork to check for adrenal insufficiency should be done at 4 months and repeated every six to detect AI early. It is easily treated with oral cortisol if need be. The first MRI should be done between 12 and 18 months to get a baseline reading and then repeated at age 3. From then on it too needs
fightald
Administrator
in
Parents of ALD Newborns
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
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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
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
Has anyone had a bone marrow transplant who has PV?
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy results back today. His bone marrow has a lot of scar fibrosis so he is referring him to the RVI Newcastle for a bone marrow transplant. We were
tracey13
in
MPN Voice
6 years ago
two kids diagnosed with ALD
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
I have two son's who have been diagnosed with ALD. One of them is 8 year old and the other is 3 year old. Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude
aadilmadarveet
in
Leukodystrophy Support
6 years ago
Identify the carrier.
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
How to diagnose if I am the carrier or my wife is. The doctors just assume that it's my wife. The reason why this is important is because I am getting a bone marrow transplant done for my elder son and I 'll be the donor for him. So trying to verify with all the sources I have as to what I am doing is
aadilmadarveet
in
Parents of ALD Newborns
6 years ago
Lukiemia and High white blood count
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
Extremely fatigued, tired and sleeping all the time. Weak and hard to walk without loosing breath. Loss of appetite. And eating very little. White blood count really high but abs neutripils are very low. Red blood a bit low. He has 40 Percent blast and they have been treating him. So far he's not showing
ConcernedSpouse2012
in
CLL Support
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
Any help in Florida?
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.
Susanissufferingtoo
in
Scleroderma & Raynaud's UK (SRUK)
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
GCA and black outs?
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Hi I'm new to this forum. Dx with pmr April this year. CRP 106. 20mg prednisolone. Worked well so slowly down to 7mg by beginning of November when all symptoms came back within days. then fell over but thought nothing of it. Following week started to feel really unwell. Husband found me unconscious
Devonspinner
in
PMRGCAuk
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
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