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Are you 11qATM CLL too ? what treatment works best? Please reply ASAP
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
My wife who loves me put me on this site to get details from others suffering from CLL. One week diagnosed i have an 11qATM deletion heterozygote and a absolute monoclonal lymoh count of 12,000. My reds and platelets good . No splenomegaly but nodes “waxing and waning” all over. Plus a rash to pollen
LovecuresCLL
in
CLL Support
5 years ago
Latest podcast - Mythbusting!
The LC team were joined by two patients, Kris and Kate, to discuss various
leukaemia
myths that swirl around the depths of the internet. You can find it on all good podcast providers by searching Bloodstream
Leukaemia
Care.
The LC team were joined by two patients, Kris and Kate, to discuss various
leukaemia
myths that swirl around the depths of the internet. You can find it on all good podcast providers by searching Bloodstream
Leukaemia
Care.
NicoleLeukaemiaCare
in
Leukaemia Support
6 years ago
Spring 2019 edition of Leukaemia Matters magazine is now available
Features: Blood cancer and women’s issues Inspiring patient's stories Patient Services News Take Your 'Spot
Leukaemia
' Challenge GP training Campaigns Corner Exercise strategies OBE awarded to inspirational volunteer Clinical Trials:
Leukaemia
study updates You can download the magazine here http:/
Features: Blood cancer and women’s issues Inspiring patient's stories Patient Services News Take Your 'Spot
Leukaemia
' Challenge GP training Campaigns Corner Exercise strategies OBE awarded to inspirational volunteer Clinical Trials:
Leukaemia
study updates You can download the magazine here http:/
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
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New test for mutations to calculate the profession of MF
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hi good folks, Hope you all are going OK. Last time I was speaking to my Hemo he told me that a test will be available in about 12 months that will identify all a MF patients mutations and will assist in predicting the progression of the illness. He said it should allow for him to predict how the illness
Hidden
in
MPN Voice
5 years ago
IGVH Hypermutation test.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that I am not hyper mutated. It reads like this: "IGVH analysis by sequencing demonstrates a clonal but functionally unproductive rearrangement.
Camaroman
in
CLL Support
5 years ago
Nplate clots
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77 I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each
Jazzbo77
in
ITP Support Association
5 years ago
Just diagnosed with Essential Thrombocythemia
Hi everyone, I'm new here. I cannot tell you how happy I am that I found this site and how much reading all of your responses to others have helped me to remain calm. I was told today that I am being referred to a hematologist and that I have Essential Thrombocythemia. I'm so anxious and afraid of
Hi everyone, I'm new here. I cannot tell you how happy I am that I found this site and how much reading all of your responses to others have helped me to remain calm. I was told today that I am being referred to a hematologist and that I have Essential Thrombocythemia. I'm so anxious and afraid of
Beachchik
in
MPN Voice
5 years ago
Expert Access Program at the CLL Society
The CLL Society is expanding our Expert Access program in 2019. Inclusion criteria are simple: a USA address, a diagnosis of CLL, and you are not currently seeing a top CLL doctor. That's it. It provides a free consult with a true CLL expert after getting and reviewing medical records from your local
The CLL Society is expanding our Expert Access program in 2019. Inclusion criteria are simple: a USA address, a diagnosis of CLL, and you are not currently seeing a top CLL doctor. That's it. It provides a free consult with a true CLL expert after getting and reviewing medical records from your local
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
Question about PMF
Hi there. I want to know that can someone with a blood picture like that of polycythemia vera have Primary Myelofibrosis. I know that PV may transform into Myelofibrosis over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
Hi there. I want to know that can someone with a blood picture like that of polycythemia vera have Primary Myelofibrosis. I know that PV may transform into Myelofibrosis over a long period but can it be PMF with high rbc count and hemoglobin initially. My Jak2 V16f is negative with normal EPO.
avdheshmzn
in
MPN Voice
5 years ago
CAR T versus Stem Cell transplant for Richter's
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?
profrich
in
CLL Support
5 years ago
remembering Chris Dwyer
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
Many in our community including myself owe much to Chris Dwyer. His death came not so much as a shock to me but a sadness in losing such a fellow warrior who had been through so much while giving so much. He had been long-suffering with so many assaults from various treatments and crippling infections
ThreeWs
in
CLL Support
5 years ago
Anyone enjoy podcasts?
It can be found on most podcast providers by searching Bloodstream
Leukaemia
Care. We're also looking for guests to talk about various elements of living with
leukaemia
. If you have a topic you'd love to discuss, we'd love to have you on a future episode - just let us know!
It can be found on most podcast providers by searching Bloodstream
Leukaemia
Care. We're also looking for guests to talk about various elements of living with
leukaemia
. If you have a topic you'd love to discuss, we'd love to have you on a future episode - just let us know!
NicoleLeukaemiaCare
in
Leukaemia Support
6 years ago
Upcoming Educational Forums and Kipps on ROR1
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
I invite you to attend our free CLL Society Patient and Caregiver Educational Forums. Featured speakers will present the very latest advances in CLL research, clinical trials, treatment options including CAR-T, patient perspectives, and tips to become an effective self-advocate. I will be at all 4 of
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
I am new here was diagnosed yesterday with Polycythaemia vera KAK2 positive I am still in shock.
Would like to hear from others with my condition.
Would like to hear from others with my condition.
Chez1947
in
MPN Voice
5 years ago
Essential Thrombocythaemia
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of
Bobthecob
in
MPN Voice
6 years ago
Introducing myself
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Hi everyone, I've been sitting on the sidelines here for a few months and I thought I should introduce myself. I am a 57 year old male from Australia and have had MBL for a number of years. My MBL has been monitored annually and was fairly stable, but in the last few years it started to creep up. My
Skyfli
in
CLL Support
5 years ago
Need your help on out of pocket cost for treatment plus to say hi to everyone
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed
Bowie1957
in
CLL Support
5 years ago
Having b-pll
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
a few times i and a couple others have been questioned about posting here because b-pll is so rare. However i happened across something on the Leukemia and Lymphoma site. If you go a third of the way down on the page under available funding they consider b-pll a subtype of cll. https://www.lls.org/
Hidden
in
CLL Support
6 years ago
imbruvica/gazyva or imbruvica/venclexta
I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications approved. Conventional pre novel drug era drugs are mostly resistant. i have been on Imbruvica for 3 months and have had dramatic improvement. I
I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications approved. Conventional pre novel drug era drugs are mostly resistant. i have been on Imbruvica for 3 months and have had dramatic improvement. I
Hidden
in
CLL Support
5 years ago
Can a PV Patient Turn Myelofibrosis So Fast?
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
I am a male PV patient of 50 years old. Diagnosed in August, 2018. I have done 7 phlebotomy sessions of 500 ml each, and stopped at the end of October due to circumstance changes beyond my control. Last week I finally get to see a doctor again and checked my blood. That was five months without a phlebotomy
Fifty2018
in
MPN Voice
6 years ago
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