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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
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
What happens when you end tocilizumab
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
I have GCA and PMR , plus a few other conditions.. I am on Prednisolone, Azothioprine and tocilizumab . I am getting towards the end of the tocilizumab injections as the aim is to get to 7 mg Pred and I am about to reduce to 9 mgs. The tocilizumab has done wonders with unreadably low CRP and ESR of 3
Caroline2079
in
PMRGCAuk
2 years ago
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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
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
World Blood Cancer Day May 28th
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Dovme
in
MPN Voice
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
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
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
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
Wellness poster for my stay at hospital
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
Kraskie1915
in
CLL Support
2 years ago
Sct question
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Johan2021
in
MPN Voice
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
Can you manage the psychological impact of treatment relapse?
Webinar 3.30pm 20th April
Registration
: Managing the psychological impact of treatment relapse here https://us02web.zoom.us/webinar/register/WN_cL13giOkRkCvkcbRZ-388Q The overall aim of this webinar is to support patients with managing the psychological impact of treatment relapse. Treatment
Webinar 3.30pm 20th April
Registration
: Managing the psychological impact of treatment relapse here https://us02web.zoom.us/webinar/register/WN_cL13giOkRkCvkcbRZ-388Q The overall aim of this webinar is to support patients with managing the psychological impact of treatment relapse. Treatment
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
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