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Is Bone marrow flow test is necessary every year?
I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I came to know that it is necessary to have BM flow test every year. Please share some information. Thanks
I had bone marrow biopsy and flow test when I was diagnosed with CLL. But now I came to know that it is necessary to have BM flow test every year. Please share some information. Thanks
Supratim
in
CLL Support
5 years ago
Idiopathic erythrocytosis
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis, Polycythaemia and PV. Maz has received an answer from Prof Harrison to say: Polycythaemia just means too much blood, PV is the actual MPN and idiopathic erythrocytosis means too many red blood
Hi Guys, apologies I couldn’t find the post regarding the differences in the terms idiopathic erythrocytosis, Polycythaemia and PV. Maz has received an answer from Prof Harrison to say: Polycythaemia just means too much blood, PV is the actual MPN and idiopathic erythrocytosis means too many red blood
Aime
in
MPN Voice
5 years ago
Tamarin study update and a new study now recruiting
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Tamarin Study
Effects of Tamoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study has been running in 13 hospitals across the UK since 2018 and to date the preliminary results are very exciting. The study is a
Mazcd
MPNVoice
in
MPN Voice
5 years ago
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Survey for the MOSAICC Study - we need your help
MOSAICC (
M
yel
O
proliferative neoplasm
S
:
A
n
I
n-depth
C
ase-
C
ontrol) Study – piecing together the causes of myeloproliferative neoplasms A UK-wide study called the MOSAICC Study will commence in 2019 to piece together the causes of MPNs and the team running
MOSAICC (
M
yel
O
proliferative neoplasm
S
:
A
n
I
n-depth
C
ase-
C
ontrol) Study – piecing together the causes of myeloproliferative neoplasms A UK-wide study called the MOSAICC Study will commence in 2019 to piece together the causes of MPNs and the team running
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Leukaemia Matters winter 2018/19 edition - Leukaemia Care charity activities, community news and patient stories
[/i] [i]Our cover star in this issue is Laura Mattei, who is currently in remission[/i] [i] from
acute
myeloid
leukaemia
(AML). She tells us about how she’s rebuilt her life after her diagnosis. [/i] [i]Merry Christmas and a Happy New Year!
[/i] [i]Our cover star in this issue is Laura Mattei, who is currently in remission[/i] [i] from
acute
myeloid
leukaemia
(AML). She tells us about how she’s rebuilt her life after her diagnosis. [/i] [i]Merry Christmas and a Happy New Year!
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
New Oxford-developed tool reads the life histories of cancer cells - how subclones develop
[i]"..a team of Oxford researchers has developed a way to track the genetic "life histories" of thousands of individual cancer cells at once, which may lead to more effective and personalized cancer treatments. Cancer cells are basically just normal cells that have accumulated certain mutations that
[i]"..a team of Oxford researchers has developed a way to track the genetic "life histories" of thousands of individual cancer cells at once, which may lead to more effective and personalized cancer treatments. Cancer cells are basically just normal cells that have accumulated certain mutations that
AussieNeil
Partner
in
CLL Support
5 years ago
Question - how many different varieties of antibodies can B-cells make? Hint - it's hypermutation (IGHV mutation) that makes it possible
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
Answer, 1 quintillion or 1,000,000,000,000,000,000 or 10^18 according to[i] a team led by Drs. Bryan Briney and Dennis R. Burton at Scripps Research examined antibody-producing B cells isolated from blood samples of 10 people between the ages of 18 and 30. ... Additional studies are needed to more accurately
AussieNeil
Partner
in
CLL Support
5 years ago
CoQ10 Benefits?
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Has anyone heard of beneficial effects of CoQ10 on CLL? I had to start taking Crestor (5mg 4 times a week) and am taking 400 mg mg of CoQ10 daily at the advice of phy. After 4 months my hmg. went from 12.0 to 12.8 and my cholesterol dropped from 260 to 202. WBC went up some but everything else pretty
Elam
in
CLL Support
5 years ago
Holy Tired
Hello, 50 year old male. Diagnosed with cll nearly 2 years ago. I see cll specialist every 3 months. 13q deleted. W and W. Dr. Not concerned about my blood numbers or my symtom. I have complained about one symptom since acquiring cll and that is fatigue. The fatigue can get so bad that it is affecting
Hello, 50 year old male. Diagnosed with cll nearly 2 years ago. I see cll specialist every 3 months. 13q deleted. W and W. Dr. Not concerned about my blood numbers or my symtom. I have complained about one symptom since acquiring cll and that is fatigue. The fatigue can get so bad that it is affecting
Dew77
in
CLL Support
5 years ago
Laymen’s genetic markers, fish test etc
Wondering where or maybe here someone can enlighten me about genetic markers involved in cll! Plan on starting treatment next month after almost 11 years W/W. I called the dr.s office this am 5:45 to be exact and asked to have a fish panel added. So I guess I’d also like to know what Genetic maker
Wondering where or maybe here someone can enlighten me about genetic markers involved in cll! Plan on starting treatment next month after almost 11 years W/W. I called the dr.s office this am 5:45 to be exact and asked to have a fish panel added. So I guess I’d also like to know what Genetic maker
haposwald
in
CLL Support
5 years ago
hydroxyurea side effects?
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
IsabelPV
in
MPN Voice
5 years ago
CLL Counts Reducing.
Hi, I am new to this site. I was diagnosed with CLL about 5yrs ago. I am watch and wait, with no signs of any symptoms. On 3/04/2017 my white cell count was 86.9, Units 10^9/L, Range (4.0-11.0). My Lymphocytes where 79.1, Units 10^9/L, Range (1.0-4.0). Since the 3/04/2017 I have had blood tests every
Hi, I am new to this site. I was diagnosed with CLL about 5yrs ago. I am watch and wait, with no signs of any symptoms. On 3/04/2017 my white cell count was 86.9, Units 10^9/L, Range (4.0-11.0). My Lymphocytes where 79.1, Units 10^9/L, Range (1.0-4.0). Since the 3/04/2017 I have had blood tests every
cartnpeg
in
CLL Support
5 years ago
Same sample of bone marrow, received different opinion
Hi all As early i had said that i have all test negative and bone marrow was normocellular... I just checked bone marrow block with another hematologist and he said hypercellular I am just confused who is wrong and who is right? And am frustrating to know is that secondary Polycythemia or polycythemia
Hi all As early i had said that i have all test negative and bone marrow was normocellular... I just checked bone marrow block with another hematologist and he said hypercellular I am just confused who is wrong and who is right? And am frustrating to know is that secondary Polycythemia or polycythemia
Vigiindia
in
MPN Voice
6 years ago
Lymph node biopsy to rule out Richtors
So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS. They will biopsy the largest node. It’s 5 cm. Well that was a kick to the stomach.
So I got the shock of my life. My hematologist wants to have me undergo a fine needle biopsy to rule out RS. They will biopsy the largest node. It’s 5 cm. Well that was a kick to the stomach.
Lola69
in
CLL Support
5 years ago
NICE approves venetoclax (VENCLYXTO) with rituximab for previously treated chronic lymphocytic leukaemia (CLL) patients
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
Great NEWS today, relapsing English and Welsh CLL patients have a new treatment approved by NICE. Ireland and Scotland NHS access will soon follow. NICE news article:
Thousands of adults with chronic lymphocytic leukaemia to benefit from new treatment option
[i]Thousands of people will benefit
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
CLL Society Alert (newsletter for USA patients)- Video Interviews with Dr. Furman, Dr. Koffman- Educational Forums & Support Groups - USA
To read the full details with live HTML links go here: https://cllsociety.org/2019/01/january-29-2019/ or here: https://cllsociety.org/Alerts/January-29-Alert.pdf - Dear Friends and Supporters of the CLL Society, I interviewed Dr. Rick Furman to set the stage for how to best consider some of the new
To read the full details with live HTML links go here: https://cllsociety.org/2019/01/january-29-2019/ or here: https://cllsociety.org/Alerts/January-29-Alert.pdf - Dear Friends and Supporters of the CLL Society, I interviewed Dr. Rick Furman to set the stage for how to best consider some of the new
lankisterguy
Volunteer
in
CLL Support
5 years ago
Treatment necessary?
I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6 months. In Nov 2012, I started rituxan. Treatment once every 3 months. First 3 treatments went fine. Then they had to stop because of severe
I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6 months. In Nov 2012, I started rituxan. Treatment once every 3 months. First 3 treatments went fine. Then they had to stop because of severe
MyCLLJourney
in
CLL Support
5 years ago
Spleen enlarged
In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told my spleen has enlarged and was given a CT scan on 21st December. They have not contacted me so presume it's stable enough until next check up in
In February 2017 I was diagnosed with CLL and am on watch and wait. WBC is about 66 and other numbers are fine. During a check up in November 2018 I was told my spleen has enlarged and was given a CT scan on 21st December. They have not contacted me so presume it's stable enough until next check up in
Tross88
in
CLL Support
5 years ago
Myelofibrosis and using medical CBD/ marijuana.
I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing. Got off of Vicodin because of new medical laws, was recommended
I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really sick and was put on 20 mg of Jakafi 6 months ago now the medication is failing. Got off of Vicodin because of new medical laws, was recommended
Boriqua
in
MPN Voice
6 years ago
Dr Manos Nikolousis discusses new drugs now available to treat Acute Myeloid Leukaemia (AML)
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
AML treatment is moving from being a standard treatment to a personalised treatment. Dr Manos Nikolousis, Clinical Director at Haematology / Stem cell transplantation Heart of England NHS Trust talks about these advancements. https://youtu.be/LUwE1xCTXNk
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
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