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HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Paraneoplastic disorder associated with MF
I was diagnosed with MF last year and from around that time I've suffered tingling which has spread from my extremities to most of my body. In case it was made worse by ruxolitinib, I've paused that but the tingling has continued. I've had most of the other tests to make sure it is not due to vitamin
I was diagnosed with MF last year and from around that time I've suffered tingling which has spread from my extremities to most of my body. In case it was made worse by ruxolitinib, I've paused that but the tingling has continued. I've had most of the other tests to make sure it is not due to vitamin
Scaredy_cat
in
MPN Voice
2 years ago
The battles we fight
The incurable disease CLL, silently creeps into our bodies, and gently starts launching an attack on the bone marrow. Wait and watch says the doctor, we can challenge it, with medications we can treat it. We wait until CLL has full control of the bone marrow and started presenting what the doctors call
The incurable disease CLL, silently creeps into our bodies, and gently starts launching an attack on the bone marrow. Wait and watch says the doctor, we can challenge it, with medications we can treat it. We wait until CLL has full control of the bone marrow and started presenting what the doctors call
AmCLL
in
CLL Support
2 years ago
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Step out and walk, run or move as many miles as you can this March for everyone who has been affected by a leukaemia diagnosis.
Read more about the step out challenge here: https://stepout.givepenny.com/ Join - Team LC and walk, run or cycle to raise funds for everyone who has been affected by a
leukaemia
diagnosis.❤️ Sign up today and you'll receive a free trolley pound! https://bit.ly/StepOutThisMarch
Read more about the step out challenge here: https://stepout.givepenny.com/ Join - Team LC and walk, run or cycle to raise funds for everyone who has been affected by a
leukaemia
diagnosis.❤️ Sign up today and you'll receive a free trolley pound! https://bit.ly/StepOutThisMarch
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Jakavi and Paxlovid interaction
Jakavi and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking Jakafi can be prescribed Paxlovid in case of a Covid infection? My husband had intermediate Myelofibrosis. So far the Jakafi has done wonders
Jakavi and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking Jakafi can be prescribed Paxlovid in case of a Covid infection? My husband had intermediate Myelofibrosis. So far the Jakafi has done wonders
Ticotopia
in
MPN Voice
2 years ago
no successful with accessing local CMDU for antivirals
Tested positive for Covid on Saturday. I have ET and take hydroxycarbamide so I contacted 111 after logging my positive LFT on the NHS website. I followed all the advice on MPN voice and blood cancer UK. Told that I would be contacted in roughly 24 hours by my local CMDU and given an assessment ,.
Tested positive for Covid on Saturday. I have ET and take hydroxycarbamide so I contacted 111 after logging my positive LFT on the NHS website. I followed all the advice on MPN voice and blood cancer UK. Told that I would be contacted in roughly 24 hours by my local CMDU and given an assessment ,.
JabON
in
MPN Voice
2 years ago
Painkillers while on Hydroxycarbamide for treatment of Polycythaemia Vera
Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfen or any similar painkillers ending in fen?
Has anyone with PV and taking Hydroxycarbamide been advised not to take Ibroprfen or any similar painkillers ending in fen?
Edinburgh1953
in
MPN Voice
2 years ago
Richter's Transformation - Update 11-05-2022
Richter's Transformation Hello partners. I want to update the status of the Richter transform group. Three weeks ago my hematologist told me that after insisting so much that all Richter's cases be shared between doctors, it has finally been achieved. He told me that they had managed to collect 52 cases
Richter's Transformation Hello partners. I want to update the status of the Richter transform group. Three weeks ago my hematologist told me that after insisting so much that all Richter's cases be shared between doctors, it has finally been achieved. He told me that they had managed to collect 52 cases
Priss69
in
CLL Support
2 years ago
Map of Human Blood Stem Cell Development Created
RESEARCH PAPER ABSTRACT https://www.nature.com/articles/s41586-022-04571-x STEM CELL TRANSPLANTATION IN CLL https://www.cancerresearchuk.org/about-cancer/chronic-lymphocytic-
leukaemia
-cll/treatment/stem-cell-bone-marrow-transplant
RESEARCH PAPER ABSTRACT https://www.nature.com/articles/s41586-022-04571-x STEM CELL TRANSPLANTATION IN CLL https://www.cancerresearchuk.org/about-cancer/chronic-lymphocytic-
leukaemia
-cll/treatment/stem-cell-bone-marrow-transplant
bennevisplace
in
CLL Support
2 years ago
CLL Society This Week (USA Support Organization) - With Online Resources Available to All CLL Patients Worldwide
Sign Up to have CLL Society’s newsletter: This Week! delivered to your email inbox every Tuesday!: https://cllsociety.org/newsletter-sign-up/
SPECIAL FEATURE: CLL Resources
CLL Society aims to provide all those living with CLL/SLL the resources they need to conquer their diagnosis
Sign Up to have CLL Society’s newsletter: This Week! delivered to your email inbox every Tuesday!: https://cllsociety.org/newsletter-sign-up/
SPECIAL FEATURE: CLL Resources
CLL Society aims to provide all those living with CLL/SLL the resources they need to conquer their diagnosis
lankisterguy
Volunteer
in
CLL Support
2 years ago
Feeling so tired and fed up
Hello all you lovely people, I have not been on here for a while so just a wee update on what's happening in my life with MF: really not much change still on Hydroxycarbamide my platelet levels are ok had a scan on my spleen that's ok but my symptoms of pain and fatigue mouth ulcers are just as bad
Hello all you lovely people, I have not been on here for a while so just a wee update on what's happening in my life with MF: really not much change still on Hydroxycarbamide my platelet levels are ok had a scan on my spleen that's ok but my symptoms of pain and fatigue mouth ulcers are just as bad
indy22
in
MPN Voice
2 years ago
Cancer Immune Therapy for MPN
There is a post from Manouche about an actual trial related to the subject here. https://healthunlocked.com/mpnvoice/posts/146777599/dual-vaccine-trial-in-myeloproliferative-neoplasms The article here has some technical details on the subject, if anyone finds interesting I noted some items. https:/
There is a post from Manouche about an actual trial related to the subject here. https://healthunlocked.com/mpnvoice/posts/146777599/dual-vaccine-trial-in-myeloproliferative-neoplasms The article here has some technical details on the subject, if anyone finds interesting I noted some items. https:/
EPguy
in
MPN Voice
2 years ago
What's the latest on access to COVID -19 treatments for the immunocompromised
The
Leukaemia
Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility criteria and processes to follow to gain access if you are included in eligibility criteria. https://www.leukaemiacare.org.uk
The
Leukaemia
Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility criteria and processes to follow to gain access if you are included in eligibility criteria. https://www.leukaemiacare.org.uk
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Surprise with obinutuzumab + venetoclax treatment
Hi all. I would like to briefly tell my story of HLL and ask for advice from the participants of this wonderful forum. The disease was diagnosed in 2008. I was under observation for 12 years. In addition, maybe because of CLL, I developed kidney failure. In 2020, the decision was made to start treatment
Hi all. I would like to briefly tell my story of HLL and ask for advice from the participants of this wonderful forum. The disease was diagnosed in 2008. I was under observation for 12 years. In addition, maybe because of CLL, I developed kidney failure. In 2020, the decision was made to start treatment
simsorok
in
CLL Support
2 years ago
Focus on thalassemia and polycythemia vera.
« Silence Therapeutics’ stuttering effort to generate clinical data on SLN124 in myelodysplastic syndrome (MDS) has conked out. Facing recruitment challenges, the RNAi specialist has decided to stop enrollment in the MDS arm of an early-phase clinical trial to focus on thalassemia and polycythemia vera
« Silence Therapeutics’ stuttering effort to generate clinical data on SLN124 in myelodysplastic syndrome (MDS) has conked out. Facing recruitment challenges, the RNAi specialist has decided to stop enrollment in the MDS arm of an early-phase clinical trial to focus on thalassemia and polycythemia vera
Manouche
in
MPN Voice
2 years ago
Query on flying
Newly diagnosed with essential thrombocythemia with cal-r mutant gene just on asprin at the moment but my question is how do i go on flying im suposed to be going tennerife my platelets are up to 803 and just waiting for my next appointment and really scared about the risks of flying
Newly diagnosed with essential thrombocythemia with cal-r mutant gene just on asprin at the moment but my question is how do i go on flying im suposed to be going tennerife my platelets are up to 803 and just waiting for my next appointment and really scared about the risks of flying
iffs
in
MPN Voice
2 years ago
Question for Jakafi takers.
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
Peaches230
in
MPN Voice
2 years ago
Paper on Misc Mutations
. -- ASXL1 is important in leukemia: <<ASXL1 mutations have significant impacts on prognosis and have been identified in 47% of MPN in the leukemic phase>> -- HU vs allele, molec response is not part of resistance: <<Whilst European
Leukaemia
NET (ELN) has a definition for resistance to hydroxyurea,
. -- ASXL1 is important in leukemia: <<ASXL1 mutations have significant impacts on prognosis and have been identified in 47% of MPN in the leukemic phase>> -- HU vs allele, molec response is not part of resistance: <<Whilst European
Leukaemia
NET (ELN) has a definition for resistance to hydroxyurea,
EPguy
in
MPN Voice
2 years ago
ULTRA-V trial discontinuing
My second post in a day. I wanted to share how my doctor approached TG Therapeutics pulling the trial as well as not seeking umbralisib FDA approval. I was in phase two and finished venetoclax and ublituximab a year ago. Because I didn't quite reach MRD negative (blood did; bone marrow did not), we
My second post in a day. I wanted to share how my doctor approached TG Therapeutics pulling the trial as well as not seeking umbralisib FDA approval. I was in phase two and finished venetoclax and ublituximab a year ago. Because I didn't quite reach MRD negative (blood did; bone marrow did not), we
beanlake14
in
CLL Support
2 years ago
EVOLVE trial for high risk chronic lymphocytic leukemia - CLL patients will test an early treatment intervention Vs watch and wait
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
CLLerinOz
Volunteer
in
CLL Support
2 years ago
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