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CAR-T post 9 months
Here’s a more detailed update shared with the
Leukaemia
Foundation for those who may end up on a similar path.
Here’s a more detailed update shared with the
Leukaemia
Foundation for those who may end up on a similar path.
Debinoz
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
Campaigns corner: To improve support and understanding of safety needs of blood cancer patients as lockdown lifts
To improve the experience of employed
patients as the COVID-19 pandemic restrictions lift.
To improve the experience of employed
patients as the COVID-19 pandemic restrictions lift.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
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Chronic Lymphocytic Leukemia/Leukaemia (CLL) Patients: Shingles, Antivirals, Antibiotics, and the new Shingrix Vaccine (Please read first)
Dear CLL Support Healthunlocked (HU) Readers, First, for those new to this forum, please have a read of: https://healthunlocked.com/cllsupport/posts/141151813/newly-diagnosed-with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll-sll-or-just-found-us-this-post-is-for-you If you are new to
Dear CLL Support Healthunlocked (HU) Readers, First, for those new to this forum, please have a read of: https://healthunlocked.com/cllsupport/posts/141151813/newly-diagnosed-with-chronic-lymphocytic-leukemia-or-small-lymphocytic-lymphoma-cll-sll-or-just-found-us-this-post-is-for-you If you are new to
Ernest2
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
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
Wednesday 1st of September is WORLD CLL DAY when the global community comes together for Blood Cancer Awareness Month to raise awareness
With CLL being the most common
leukaemia
, the number 1 and first day of Blood Cancer Awareness Month, 1st September was chosen by the international CLL community for World CLL Day.
With CLL being the most common
leukaemia
, the number 1 and first day of Blood Cancer Awareness Month, 1st September was chosen by the international CLL community for World CLL Day.
HAIRBEAR_UK
in
Leukaemia 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
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
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
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
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
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
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
Leukaemia Care Interview
Hello all, I have just finished recording an interview with
Leukaemia
Care for use in their Spot
Leukaemia
Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now.
Hello all, I have just finished recording an interview with
Leukaemia
Care for use in their Spot
Leukaemia
Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now.
kitchengardener2
in
CLL Support
3 years ago
No more mutation test?
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Anonymous022719-
in
MPN Voice
3 years ago
Richter transformation of CLL: a British Society for Haematology Good Practice Paper
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
Jm954
Administrator
in
CLL Support
3 years ago
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