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High Red Blood counts neg. Jak2 and all mutation tests
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
I have been diagnosed with primary polycythemia because all of my red blood counts were all quite high. My platelets were normal but monocytes were high and mutation tests came back negative. I’m scheduled to see hematologist in a month, it’s frustrating! I read that sometimes mutation ie jak2 sometimes
Cali-Med
in
MPN Voice
5 years ago
Jakafi
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?
USSpurdy
in
MPN Voice
5 years ago
Have you been diagnosed with acute leukaemia? Share your experience in a global quality of life survey and help drive improvements in Care.
ALAN - The Acute Leukaemia Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an acute leukaemia diagnosis. The network's steering committee is chaired by our own Advocacy Director at Leukaemia Care There is an urgent
ALAN - The Acute Leukaemia Advocates Network is an international group of patient advocates and charities supporting patients in their own countries who live with an acute leukaemia diagnosis. The network's steering committee is chaired by our own Advocacy Director at Leukaemia Care There is an urgent
HAIRBEAR_UK
in
Leukaemia Support
5 years ago
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We eat what we are – let’s detoxify the word ‘chemical’
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
The only thing chemical free is a perfect vacuum. [i]"Food is a bunch of chemicals, nothing more, nothing less. When we eat, we eat chemicals. Some are simple, such as water or salt. Some are complex, such as the proteins in steak. But they’re all chemicals. There is no part of food that is not chemical
AussieNeil
Partner
in
CLL Support
5 years ago
UK CLL Clinical Trial Portfolio updated May 2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
The Portfolio of clinical trials available in the UK has been updated and is available on the main site. Thanks to Garry for helping to prepare this for us https://www.cllsupport.org.uk/article/uk-cll-clinical-trials-portfolio-may-2019
Myrddin
in
CLL Support
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
Leukaemia Support
5 years ago
Cheap Ibrutinib for B Cell Prolymphocitic Leukemia Patient in Pakistan
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
My father was diagnosed with B Cell Prolymphocitic Leukemia in March 2017. He received 6 Cycles of Chemotherapy (Rituximab+Bendamestine). Last cycle was received in January 2018. Now the disease has relapsed and doctor has advised Ibrutinib. In Pakistan Ibrutinib costs Pakistani Rupees 200,000/- per
B-PLL_Pakistan
in
CLL Support
5 years ago
What is the rate for someone with ET to progress to myelofibrosis?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
I have slight increase in platelets and mild splenomegaly. My hematologist gave me 15% rate for progression to ET. Does anyone else has a percentage given from their hematologist?
Aneliv9
in
MPN Voice
5 years ago
Test for Patients' Treatment Response to Chronic Lymphocytic Leukemia Cut to 1 Day
https://www.selectscience.net/industry-news/test-for-patients-treatment-response-to-chronic-
lymphocytic
-
leukemia
-cut-to-1-day/?&classID=8&artID=48689
https://www.selectscience.net/industry-news/test-for-patients-treatment-response-to-chronic-
lymphocytic
-
leukemia
-cut-to-1-day/?&classID=8&artID=48689
wmay13241
in
CLL Support
5 years ago
My AED ...
Well I took plunge and bought a heart start or AED Quite scary but the do save lives BUT with any AED purchase CPR resuscitation know how is a must as they go hand in hand. https://youtu.be/msRft-g-k_s What the say flat on back head back and chest compressions hard and fast. Quite a feet for anyone
Well I took plunge and bought a heart start or AED Quite scary but the do save lives BUT with any AED purchase CPR resuscitation know how is a must as they go hand in hand. https://youtu.be/msRft-g-k_s What the say flat on back head back and chest compressions hard and fast. Quite a feet for anyone
Hidden
in
Lung Conditions Community Forum
5 years ago
Explainer: what’s actually in our blood?
[i]Blood is vitally important for our body. As it’s pumped around our body through veins and arteries, it transports oxygen from our lungs to all of the other organs, tissues and cells that need it. Blood also removes waste products from our organs and tissues, taking them to the liver and kidneys, where
[i]Blood is vitally important for our body. As it’s pumped around our body through veins and arteries, it transports oxygen from our lungs to all of the other organs, tissues and cells that need it. Blood also removes waste products from our organs and tissues, taking them to the liver and kidneys, where
AussieNeil
Partner
in
CLL Support
5 years ago
Vitamin c and fibrosis
Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen development from vitamin c? It has so many other benefits in haematological parameters that I want to continue it but cautious due to forming collagen fibrosis. Someone with a technical mind may be able to decipher this VERY
Can anyone offer incite as to whether vitamin c promotes fibrosis via collagen development from vitamin c? It has so many other benefits in haematological parameters that I want to continue it but cautious due to forming collagen fibrosis. Someone with a technical mind may be able to decipher this VERY
fee13
in
MPN Voice
5 years ago
Updown Blood counts
Hello Everyone, Recently i have experience updown blood counts,i had continued to drop down in blood counts after four months of phlebotomy but CBC results up and down since last 10 days Before 10 days my CBC shows HB-16.9(range-13 to 17) Hct-47(40 to 50) RBC-5.1(4.50to 5.5) MCV-93(80to100) MCH-33.70
Hello Everyone, Recently i have experience updown blood counts,i had continued to drop down in blood counts after four months of phlebotomy but CBC results up and down since last 10 days Before 10 days my CBC shows HB-16.9(range-13 to 17) Hct-47(40 to 50) RBC-5.1(4.50to 5.5) MCV-93(80to100) MCH-33.70
Vigiindia
in
MPN Voice
5 years ago
Awaiting FISH results & bone marrow biopsy
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections roughly every 6-8 weeks since then... have been neutropenic on some of these occasions.. haemoglobin and platelet counts low but stable... wbc
AR0613
in
CLL Support
5 years ago
I have TP53
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't afford CarT. Are there any Clinical trials for CarT at this point? Presently I am on Ibrutinib (have been for 10 months and doing relatively well
Doremefasol
in
CLL Support
5 years ago
Nana
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
I was diagnosed with cll just before Christmas in 2018. Needless to say I was absolutely floored as I did not even feel sick. I was referred to Dr. Ahmed Galal at the Duke Cancer Center. The day I walked into his office the Grimm reaper was riding on my back. This wonderful man looked at me and said
Hidden
in
CLL Support
5 years ago
CLL night sweats
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
Having horrible night sweats...have 3 fans going..on watch and wait..highest WBC 50,000..any relief for this?
truff4507
in
CLL Support
5 years ago
Good News
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
I have had the results of my bone marrow biopsy this week and my six months of FCR chemo have done the trick, I am now clear of any signs of cll cancer cells. This obviously is a great relief and although fatigue is still part of my life I am hoping for many years of being cancer free. I wish every single
dandelup
in
CLL Support
5 years ago
Lab Visit
Hi all, For those of you who remember me say I was going to visit the Lab! I went this week - what a fantastic encouraging view I had on the research being done in the Southampton Research Department , work and research results which are shared backwards and forwards between Bournemouth, Canada, America
Hi all, For those of you who remember me say I was going to visit the Lab! I went this week - what a fantastic encouraging view I had on the research being done in the Southampton Research Department , work and research results which are shared backwards and forwards between Bournemouth, Canada, America
retired46
in
CLL Support
5 years ago
AXSL MUTATION
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
Hi Folks, I keep up to speed with the Forum, I don't often post, when I do, I have always had kind informative replies... I joined you folk last year in March, after ET Diagnosis.. Little did I know by May 18th, I would be diagnosed with MF Intermediate 1. After BMB which I'm so glad I had it, at least
pontygirl
in
MPN Voice
5 years ago
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