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Just diagnosed
42 year old speech therapist diagnosed with large granular lymphocytic leukemia day after thanksgiving 2021. Haven’t had my first appointment yet. No idea what to ask or what treatments will he recommended.
42 year old speech therapist diagnosed with large granular lymphocytic leukemia day after thanksgiving 2021. Haven’t had my first appointment yet. No idea what to ask or what treatments will he recommended.
basketballmom645
in
Leukaemia CARE
2 years ago
Myelofibrosis and nausea
Hi everyone. I was diagnosed with Prefibrotic Myelofibrosis 3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the mornings with breakfast. The last few weeks I have been waking feeling nauseous- once I have eaten it eases but if I am late having lunch it returns
Hi everyone. I was diagnosed with Prefibrotic Myelofibrosis 3 years ago and current take asprin and 500mg Hu 8 times a week. I take the medication in the mornings with breakfast. The last few weeks I have been waking feeling nauseous- once I have eaten it eases but if I am late having lunch it returns
kiwitraveller
in
MPN Voice
2 years ago
HELP—Positive COVID test
Hi all, I’m thankful for this community, I’m a long time reader, I don’t comment often but I need some advice tonight. My mom was diagnosed with CLL in Spring 2019. She is on ibrutinib and her lymphocytes have come down from 711 (!) in May 2019 to 98 a few months ago at her last appointment. She developed
Hi all, I’m thankful for this community, I’m a long time reader, I don’t comment often but I need some advice tonight. My mom was diagnosed with CLL in Spring 2019. She is on ibrutinib and her lymphocytes have come down from 711 (!) in May 2019 to 98 a few months ago at her last appointment. She developed
DaughterofCLLfighter
in
CLL Support
2 years ago
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Webinar - 3.30pm 17th December - Making the best of your CLL medical appointments
This webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and register here: https://us02web.zoom.us/webinar/register/WN_5vLIQeuNQSi2os7pGy1VtQ The aims of the webinar are: · To
This webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and register here: https://us02web.zoom.us/webinar/register/WN_5vLIQeuNQSi2os7pGy1VtQ The aims of the webinar are: · To
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Webinar - 3.30pm 10th December - End of life care for leukaemia
Hi all this a delicate and very important topic. We all work together here with hope and information to help each other cope when with living with Leukaemia. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out. This
Hi all this a delicate and very important topic. We all work together here with hope and information to help each other cope when with living with Leukaemia. One day that may change and we may require different information to prepare should treatment no longer be appropriate and options run out. This
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Which monoclonal antibody would work with omicron covid 19?
Which monoclonal antibody would work with omicron covid 19? Reposted from CLLSLL@groups.io : https://groups.io/g/CLLSLL/message/32338 with permission from the author - [i] From: Rick Furman Date: Sat, 18 Dec 2021 19:29:29 EST Right now, the majority of variants isolated in the US are still delta
Which monoclonal antibody would work with omicron covid 19? Reposted from CLLSLL@groups.io : https://groups.io/g/CLLSLL/message/32338 with permission from the author - [i] From: Rick Furman Date: Sat, 18 Dec 2021 19:29:29 EST Right now, the majority of variants isolated in the US are still delta
lankisterguy
Volunteer
in
CLL Support
2 years ago
Night Sweats
I was diagnosed in March 2020 and have had treatment with both Ibrutinib and Venetoclax. I am currently on no chemo drugs and may restart Venetoclax late January 2022. My blood counts have been continuously low and particulary in 2021 I had to spend time in hospital while I received anti-biotics and
I was diagnosed in March 2020 and have had treatment with both Ibrutinib and Venetoclax. I am currently on no chemo drugs and may restart Venetoclax late January 2022. My blood counts have been continuously low and particulary in 2021 I had to spend time in hospital while I received anti-biotics and
Dym230109
in
CLL Support
2 years ago
Melatonin and CLL
I ran across this article - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057911/ a bit technical but further down it talks about apoptosis of leukemia cells. Does anyone have any input on taking Melatonin - I am taking 10mg at night to help with sleep. Just a curious question. I am on W&W two years
I ran across this article - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057911/ a bit technical but further down it talks about apoptosis of leukemia cells. Does anyone have any input on taking Melatonin - I am taking 10mg at night to help with sleep. Just a curious question. I am on W&W two years
CBME
in
CLL Support
2 years ago
Support for CLL Patients
This HU site, where we share information, experiences and friendship is a massive support for many and with Christmas approaching and many of us shielding to a greater or lesser extent, I thought it might be a good time to look at other support available for CLL patients and caregivers. In the UK, [
This HU site, where we share information, experiences and friendship is a massive support for many and with Christmas approaching and many of us shielding to a greater or lesser extent, I thought it might be a good time to look at other support available for CLL patients and caregivers. In the UK, [
Jm954
Administrator
in
CLL Support
2 years ago
Massage with Cll?
This could be a dumb question but do massages negatively impact people with Cll? Thoughts?
This could be a dumb question but do massages negatively impact people with Cll? Thoughts?
Koda1234
in
CLL Support
2 years ago
Dr. Koffman’s ASH 2021 Day 4 Highlights
Dr. Koffman’s ASH 2021 Day 4 Highlights: In this year’s Day 4 wrap-up, Dr. Koffman keeps us in touch with what currently stands front and center in the world of CLL-relevant clinical trials. His overview touches on combinations of novel agents, innovative treatment strategies, MRD status to guide therapy
Dr. Koffman’s ASH 2021 Day 4 Highlights: In this year’s Day 4 wrap-up, Dr. Koffman keeps us in touch with what currently stands front and center in the world of CLL-relevant clinical trials. His overview touches on combinations of novel agents, innovative treatment strategies, MRD status to guide therapy
bkoffman
CLL CURE Hero
in
CLL Support
2 years ago
UK Webinar this Friday - 3.30pm GMT 17th December - Making the best of your CLL medical appointments
Hi friends a reminder - You may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here:
Hi friends a reminder - You may find this Leukaemia Care webinar of interest. The webinar will focus on how CLL patients can get the most out of their medical appointments, regardless of purpose, format and at whatever stage of your pathway. You can join us and the discussion by registering here:
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
CLL Society ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
ASH 2021 Highlights from Day 2 of ASH 2021! Dr. Brian Koffman gives up updates on the reversible non-covalently binding BTKi (Bruton’s tyrosine kinase inhibitor) pirtobrutinib (formerly LOXO-305), another reversable BTKi known as MK-1026 (formerly ARQ-531), 3-year follow-up data from the Ascend Trial
bkoffman
CLL CURE Hero
in
CLL Support
2 years ago
Biotin as a boost for hair thinninh
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
I have been told Biotin is good for thinning hair.does anyone know of any reason it may affect my blood test results.I am on weekly 90mg peginterferon?
caroline_284
in
MPN Voice
3 years ago
Antibody test update. Good News!
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
I have just received my result for the Covid Cancer Antibody Survey which I posted about last week. I am very pleased to say I have antibodies. It doesn’t say in what percentage but I am relieved to know I have some protection as I was sure it would be negative. I was notified by email and text very
azaelea
in
MPN Voice
3 years ago
Progression to aml
I’ve had pv for 12 years. 3 months ago it progressed to
acute
myeloid
leukaemia
with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy.
I’ve had pv for 12 years. 3 months ago it progressed to
acute
myeloid
leukaemia
with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy.
Hidden
in
MPN Voice
3 years ago
SCT risks
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
My husband and I are just back from Southampton after another appointment with my SCT specialist. This was the one where he went through all the risks of the procedure, including the statistic that 20% die. Although I knew this already from Prof Harrison, it was difficult to be reminded. He did say that
Otterfield
in
MPN Voice
3 years ago
Treating autoimmune hemolytic anemia (AIHA)
Does anyone have autoimmune hemolytic anemia (AIHA) along with your chronic lymphocytic leukemia (CLL). I believe it occurs for around 10% of CLL patients. Any experience or knowledge about it would help. My Haptoglobin has gone from 39 in September to 14 this past week. As I understand it, when it
Does anyone have autoimmune hemolytic anemia (AIHA) along with your chronic lymphocytic leukemia (CLL). I believe it occurs for around 10% of CLL patients. Any experience or knowledge about it would help. My Haptoglobin has gone from 39 in September to 14 this past week. As I understand it, when it
SantaZia
in
CLL Support
2 years ago
Rituxan
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
Hello everyone. I am 6 years with CLL. My skin issues keep getting worse and my Oncologist has just recommended a 4 week (once per week) infusion of Rituxan. Does anyone have experience with this? Thankful this is a minor issue. Thank you!
mkuhlman
in
CLL Support
3 years ago
Two things. White blood count creeping up. And waiting for results from spike protein test.
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
I just went for my regular hematologist appointment. My white blood count hovered between 18 and 20. Today it was 23. My doctor isn't worried but is having me come back in 3 months instead of 4. She said not to worry but I see a slight upward trend. Any advice? Also I'm waiting for my results from
elm1
in
CLL Support
2 years ago
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