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"Becoming Your Own (CLL)Project Manager" by Doreen Zetterlund is part of CLL Society & Huntsman Cancer Institute's Monday Nov. 8th CLL Forum
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
Tuesday Nov. 9th! Still time to register! Patients who manage their own CLL strategies without the help of a caregiver are in for a rare treat as CLL patient Doreen Zetterlund leads us through her amazing "how to" video Becoming Your Own Project Manager. Doreen's presentation is part of Huntsman Cancer
bkoffman
CLL CURE Hero
in
CLL Support
2 years ago
CD38 In CLL
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Went for my annual checkup yesterday, WBC at 19.1 from 15.1 last year. Not enough WBC to know if mutated or not. The doctor did confirm I'm don't have 17p but I do have CD38.. according to Goggle I may see God sooner! What's the deal?
Laura3mini
in
CLL Support
2 years ago
Webinar 11th August 12.30pm, CAR - T therapy update
Luminita Keating, CAR-T Clinical Nurse Specialist, Addenbrooke's, Cambridge University Hospitals NHS Foundation Trust Deborah Sims, CAR-T treated chronic lymphocytic
leukaemia
(CLL) patient Sophie Wheldon, CAR-T treated
acute
lymphoblastic
leukaemia
(ALL) patient
Luminita Keating, CAR-T Clinical Nurse Specialist, Addenbrooke's, Cambridge University Hospitals NHS Foundation Trust Deborah Sims, CAR-T treated chronic lymphocytic
leukaemia
(CLL) patient Sophie Wheldon, CAR-T treated
acute
lymphoblastic
leukaemia
(ALL) patient
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
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3rd Covid Vaccine
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
So I got my letter from Haematology today about the 3rd primary covid vaccine. Moment of excitement, then read through frantically trying to find MPNs or PV on the list of eligible criteria. It wasn't there. Re-read the three page letter a little more frantically and finally found the word hydroxycarbamide
MWxxxx
in
MPN Voice
3 years ago
Treatment option with del 17 positive but IGHV mutated
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
I am CLL since 2003 on wait and watch. Now my count has increased to 80000 and platlets fallen to 1 Lakhs. RBC is normal.My spleen is 16.5 cms My FISH report indicates del17 positive but IGHV is mutated. Is my CLL agressive and needs special treatment especially because I am del17 positive . But IGHV
Ashwas
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
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
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
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
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
Administrator
in
Leukaemia CARE
3 years ago
Wednesday is the start of Blood Cancer Awareness Month - Help raise awareness of the signs and symptoms of leukaemia to save lives
The highest emergency presentation rates for any cancer type occur in
acute
lymphoblastic
leukaemia
(ALL), at 66% of patients. This is a huge difference when compared with the overall cancer emergency presentation percentage (21%).
The highest emergency presentation rates for any cancer type occur in
acute
lymphoblastic
leukaemia
(ALL), at 66% of patients. This is a huge difference when compared with the overall cancer emergency presentation percentage (21%).
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
Acalabrutinib Plus Venetoclax and Obinutuzumab Achieves High Bone Marrow uMRD Rate in Chronic Lymphocytic Leukemia - CLL
Great news from this long awaited first published phase 2 study reporting the efficacy of this AVO triplet, which are the most active new drugs approved for patients with CLL. [i]"In patients with chronic lymphocytic leukemia (CLL) and undetectable minimal residual disease (MRD) in the bone marrow,
Great news from this long awaited first published phase 2 study reporting the efficacy of this AVO triplet, which are the most active new drugs approved for patients with CLL. [i]"In patients with chronic lymphocytic leukemia (CLL) and undetectable minimal residual disease (MRD) in the bone marrow,
AussieNeil
Administrator
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
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
Administrator
in
Leukaemia CARE
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
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
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
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
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