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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
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
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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
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
Webinar - 3.30pm 8th February - Latest updates on AML and what this means for you
Leukaemia
Advocates Network and Leukaemia Care.
Leukaemia
Advocates Network and Leukaemia Care.
HAIRBEAR_UK
in
Leukaemia Support
3 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
Webinar - 6.30pm 8th February - Latest updates on ALL and what this means for you
This is being organised as a collaboration between the
Acute
Leukaemia
Advocates Network and Leukaemia Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
This is being organised as a collaboration between the
Acute
Leukaemia
Advocates Network and Leukaemia Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
HAIRBEAR_UK
in
Leukaemia Support
3 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
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
Administrator
in
CLL Support
2 years ago
Stopping Ruxolitinib
I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it has been getting more widespread. The gp has asked for a neurologist appointment but no idea when that will happen. Because rux can affect nerves
I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it has been getting more widespread. The gp has asked for a neurologist appointment but no idea when that will happen. Because rux can affect nerves
Scaredy_cat
in
MPN Voice
2 years ago
Are you a CLL patient who is unsure of why you are on watch and wait?
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
Clinical Trail Updates for Patients
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
hunter5582
in
MPN Voice
2 years ago
By 5 years, about 14% of patients have undetectable JAK2 mutations.
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
Manouche
in
MPN Voice
2 years ago
CoQ10 dosage and when to take ?
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
janvog
in
CLL Support
2 years ago
Cellular and humoral immune response to SARS-CoV-2 mRNA vaccines in patients treated with either Ibrutinib or Rituximab
For more than a year we have been reminding each other that even if we don't produce antibodies in response to covid vaccination, we may still produce a cellular response, that is a response that puts our T-cells on guard to fight a covid infection. The study cited below provides data to back up
For more than a year we have been reminding each other that even if we don't produce antibodies in response to covid vaccination, we may still produce a cellular response, that is a response that puts our T-cells on guard to fight a covid infection. The study cited below provides data to back up
gardening-girl
in
CLL Support
2 years ago
Webinar re. MPN Clinical Trials as an Option
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
hunter5582
in
MPN Voice
2 years ago
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