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UK National COVID cancer test survey - Any results
Hi. I have just had a negative antibody test result after taking the National COVID cancer survey test. Obviously disappointed after having the 3rd dose of the Pfizer vaccine on the 2 Oct. Not sure if it makes a difference to me only waiting 17 day between the Jab and the test, perhaps I should have
Hi. I have just had a negative antibody test result after taking the National COVID cancer survey test. Obviously disappointed after having the 3rd dose of the Pfizer vaccine on the 2 Oct. Not sure if it makes a difference to me only waiting 17 day between the Jab and the test, perhaps I should have
Strech51
in
CLL Support
3 years ago
LLS Covid-19 Vaccine Trial: Antibody response to SARS-CoV-2 vaccines in patients with hematologic malignancies
abstract_id=3845994 [i]COVID-19 vaccine efficacy in patients with chronic
lymphocytic
leukemia
[/i] https://www.nature.com/articles/s41375-021-01270-w [i]Efficacy of the BNT162b2 mRNA COVID-19 Vaccine in Patients with Chronic
Lymphocytic
Leukemia
[/i] https://pubmed.ncbi.nlm.nih.gov/33861303/ [i]Here
abstract_id=3845994 [i]COVID-19 vaccine efficacy in patients with chronic
lymphocytic
leukemia
[/i] https://www.nature.com/articles/s41375-021-01270-w [i]Efficacy of the BNT162b2 mRNA COVID-19 Vaccine in Patients with Chronic
Lymphocytic
Leukemia
[/i] https://pubmed.ncbi.nlm.nih.gov/33861303/ [i]Here
lankisterguy
Volunteer
in
CLL Support
3 years ago
Turmeric and Ruxolitinib
I have been taking Turmeric Shots for sometime and found them a tremendous benefit in easing the inflammation for my OA. However in March I started taking Ruxolitinib and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time
I have been taking Turmeric Shots for sometime and found them a tremendous benefit in easing the inflammation for my OA. However in March I started taking Ruxolitinib and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time
Heather270240
in
MPN Voice
3 years ago
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Vaccines, 3rd dose, LLS results and more
CLL Society’s Recommendations for COVID-19 Vaccinated Chronic
Lymphocytic
Leukemia
(CLL) Patients-Based Upon the CDC’s Updated Considerations for People Who Are Immunocompromised and Other Underlying Data ( https://cllsociety.org/2021/07/cll-societys-recommendations-for-covid-19-vaccinated-chronic-
lymphocytic
-
leukemia
-cll-patients-based-on-the-cdc-updated-considerations-for-people-who-are-immunocompromised-and-on-the-underl
CLL Society’s Recommendations for COVID-19 Vaccinated Chronic
Lymphocytic
Leukemia
(CLL) Patients-Based Upon the CDC’s Updated Considerations for People Who Are Immunocompromised and Other Underlying Data ( https://cllsociety.org/2021/07/cll-societys-recommendations-for-covid-19-vaccinated-chronic-
lymphocytic
-
leukemia
-cll-patients-based-on-the-cdc-updated-considerations-for-people-who-are-immunocompromised-and-on-the-underl
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Intense exercise
I have early stage CLL diagnosed about a year ago. I am a regular marathon runner and just a week ago ran my first 50 mile run. My hematologist told me not to change anything I was doing including my ultra running. So far I don’t think I have had any adverse effects from this passion of mine which is
I have early stage CLL diagnosed about a year ago. I am a regular marathon runner and just a week ago ran my first 50 mile run. My hematologist told me not to change anything I was doing including my ultra running. So far I don’t think I have had any adverse effects from this passion of mine which is
celticfan
in
CLL Support
3 years ago
Anyone know who is delivering the third primary Covid vaccine?
I took the letter from MPN voice to my surgery yesterday to be told that they are only doing boosters. I have left it with a letter for my GP to see what happens, but it appears locally that they have not taken this into account as yet. Is anyone else getting a similar reaction?
I took the letter from MPN voice to my surgery yesterday to be told that they are only doing boosters. I have left it with a letter for my GP to see what happens, but it appears locally that they have not taken this into account as yet. Is anyone else getting a similar reaction?
gset
in
MPN Voice
3 years ago
Waiting for diagnosis
Hello I'm 61 and haven't yet been diagnosed with CLL although my GP has suggested I have it. I'm waiting for my haematology appointment but have been triaged as on the 12 week list. That's all very well for them to say - they don't have to lie awake thinking about whether or not I have a blood cancer
Hello I'm 61 and haven't yet been diagnosed with CLL although my GP has suggested I have it. I'm waiting for my haematology appointment but have been triaged as on the 12 week list. That's all very well for them to say - they don't have to lie awake thinking about whether or not I have a blood cancer
Stitcher100
in
CLL Support
3 years ago
3.30pm 14th October webinar - Immunisations and living with the challenges of a compromised immune system with CLL
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
Leukaemia Care have organised this webinar to follow on from yesterday's webinar for people affected by a diagnosis of CLL . It will be held at
3.30PM GMT 14th October
You can register in advance here: https://us02web.zoom.us/webinar/register/WN_0_8lKqLPQVGf4JYvwt2aRw The webinar is to aid with
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Join us tomorrow for webinar - COVID-19 and leukaemia; what more do we know?
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
Join us
tomorrow Tuesday 28th September at 4.30pm
for a discussion and update from clinical experts and trials data looking at strategies for the immune compromised.. You can register here: https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w This Leukaemia Care webinar will explore
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Pruritus and peginterferon
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
Does anyone feel their pruritus has worsened while using peginterferon? Also if the itching becomes more bothersome does it mean the illness is getting worse? I am on weekly injections 90mcg for primary myelofibrosis for about 2 years and do not have a lot of itching, just occasional.
caroline_284
in
MPN Voice
3 years ago
Frontline Ibrutinib/Venetoclax Elicits Durable Responses in CLL With Undetectable MRD
Fixed duration ibrutinib and venetoclax (I+V) versus chlorambucil plus obinutuzumab (CLB+O) for first-line (1L) chronic
lymphocytic
leukemia
(CLL): primary analysis of the phase 3 GLOW study.
Fixed duration ibrutinib and venetoclax (I+V) versus chlorambucil plus obinutuzumab (CLB+O) for first-line (1L) chronic
lymphocytic
leukemia
(CLL): primary analysis of the phase 3 GLOW study.
lankisterguy
Volunteer
in
CLL Support
3 years ago
My HCT was low for me..help.
I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42 which is when I get a PB. By on 9-22 I was at the doctor so I got a CBC. It was about 40 days after my phlebotomy. My hemo just emailed that he
I have PV. Not taking any meds for it yet. I had a phlebotomy on 8-10. I normally don't get a CBC for 2-3 months after a PB to allow my HCT to get above 42 which is when I get a PB. By on 9-22 I was at the doctor so I got a CBC. It was about 40 days after my phlebotomy. My hemo just emailed that he
Elizka
in
MPN Voice
3 years ago
4 Checklists! Plan for COVID exposure now! Know where to find monoclonal antibodies. Be prepared!
documents: #1Directions for Completing the COVID-19 Planning Checklist #2 COVID-19 Planning Checklist: Complete Prior To Exposure #3 Household Quarantine Plan #4 COVID-19 Action Plan: Do These Things After Testing Positive for COVID-19 https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-
lymphocytic
-
leukemia
-cll-preparing-for-pre-and-post-covid
documents: #1Directions for Completing the COVID-19 Planning Checklist #2 COVID-19 Planning Checklist: Complete Prior To Exposure #3 Household Quarantine Plan #4 COVID-19 Action Plan: Do These Things After Testing Positive for COVID-19 https://cllsociety.org/2021/07/covid-19-plan-checklists-for-chronic-
lymphocytic
-
leukemia
-cll-preparing-for-pre-and-post-covid
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
An unusual, potent antibody to SARS-CoV-2 variants is isolated from a recovered patient
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
Given time, ongoing mutation of the SARS-COV2 virus is likely to produce a super-lineage, at least as transmissible as the Delta variant and more resistant to current vaccines and monoclonal antibodies aimed at different targets in the receptor binding domain of the spike protein. A variety of candidate
bennevisplace
in
CLL Support
3 years ago
Sodabread
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc
Sodabread
in
MPN Voice
3 years ago
I’m new here…
My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.
GrannyMyers
in
CLL Support
3 years ago
Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason.
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
Special Article: The Cumulative Risk of Multiple CT Scans on Blood Cancer Patients Enrolled in Clinical Trials by Board member Bob Levis. Some CLL clinical trials insist that patients have multiple CT scans. Every test should have a reason. Patients should ask questions! https://cllsociety.org/2021/09
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Et with calr gene
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
I finally got my diagnosis i have essential thrombocythemia with calr mutant gene, just started on an asprin platelets are at 690 would appreciate anyones stories on this Thanks Marie
iffs
in
MPN Voice
3 years ago
Long Term INF Results
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
EPguy
in
MPN Voice
3 years ago
CLL Society Webinar The Right Tests at the Right Time for CLL. Tests to guide treatment in all phases of CLL have never been better!
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
Coming this Friday October 15th: The Right Tests at the Right Time! Testing to guide treatment in all phases of CLL has never been better! Hear the stunning first-hand accounts of CLL patients Tammi Garrett and David Klausmeyer, whose treatment regimens were radically changed by critical testing, echoing
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
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