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Acalabrutinib versus Covid19?
Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact on the covid 19 virus as a result of the Acalabrutinib? It will be greatly appreciated if CLL patients who are taking Acalabrutinib and contracted
Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact on the covid 19 virus as a result of the Acalabrutinib? It will be greatly appreciated if CLL patients who are taking Acalabrutinib and contracted
spanish36
in
CLL Support
2 years ago
Green tea
A 2020 database reviewTrusted Source of epidemiological and experimental studies in humans produced inconsistent results as well as limited evidence of the benefit of green tea consumption for lowering the risk of cancer. The researchers assessed 142 completed studies, including 1.1 million participants
A 2020 database reviewTrusted Source of epidemiological and experimental studies in humans produced inconsistent results as well as limited evidence of the benefit of green tea consumption for lowering the risk of cancer. The researchers assessed 142 completed studies, including 1.1 million participants
Mostew
in
MPN Voice
2 years ago
Introduction with questions - MPNs & Crispr Cas9 Gene editing
Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going
Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going
Hello94
in
MPN Voice
2 years ago
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Hello, new diagnosed Cll and have questions
I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard. I'm not clear on "living a long time" but the oncologist isn't doing anything... but on the same tone, makes this sound like a 5 year death sentence. What about Richter syndrome
I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard. I'm not clear on "living a long time" but the oncologist isn't doing anything... but on the same tone, makes this sound like a 5 year death sentence. What about Richter syndrome
Diagnosedat50
in
CLL Support
2 years ago
What genetic / genomic information does a BMB give that bloods don’t?
Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard time getting accurate information about my mutation status. The last two BMBs were poor samples - short or crushed cores. Only found out when
Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard time getting accurate information about my mutation status. The last two BMBs were poor samples - short or crushed cores. Only found out when
Rachelthepotter
in
MPN Voice
2 years ago
Just diagnosed
42 year old speech therapist diagnosed with large granular
lymphocytic
leukemia
day after thanksgiving 2021. Haven’t had my first appointment yet. No idea what to ask or what treatments will he recommended.
42 year old speech therapist diagnosed with large granular
lymphocytic
leukemia
day after thanksgiving 2021. Haven’t had my first appointment yet. No idea what to ask or what treatments will he recommended.
basketballmom645_US
in
Leukaemia Support
3 years ago
UK Patients: Can you help with your opinion about treatment options. Have you received Ibrutinib + Venetoclax as your first treatment?
Can you help us to provide evidence of the patient experience of treatments in CLL and specifically, of this treatment for a UK NICE technology appraisal in the near future. CLL Support and working with Leukaemia Care and Lymphoma Action to support this treatment as an option for CLL patients. The first
Can you help us to provide evidence of the patient experience of treatments in CLL and specifically, of this treatment for a UK NICE technology appraisal in the near future. CLL Support and working with Leukaemia Care and Lymphoma Action to support this treatment as an option for CLL patients. The first
Jm954
Administrator
in
CLL Support
2 years ago
Canadian Access to COVID-19 Treatments for Persons Living with CLL
Each province and territory in Canada has its own set of rules and procedures to access treatments for COVID 19, both preventative treatments (Evusheld) and post exposure treatments (Paxlovid, Remdisivir, etc.) . CLL Canada has prepared a document which describes the treatments available and how to
Each province and territory in Canada has its own set of rules and procedures to access treatments for COVID 19, both preventative treatments (Evusheld) and post exposure treatments (Paxlovid, Remdisivir, etc.) . CLL Canada has prepared a document which describes the treatments available and how to
CLL_Canada_Group
in
CLL Support
2 years ago
MPN Advocacy & Education international - Patient & Caregivers Conference April 15, 2022
For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD https://www.youtube.com/watch?v=5W9L104Xr6M Topic: New Approved MPN Drugs and Others, Ruben Mesa, MD https://www.youtube.com/watch?v=WdtM0CA-17A Topic: Demystifying
For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD https://www.youtube.com/watch?v=5W9L104Xr6M Topic: New Approved MPN Drugs and Others, Ruben Mesa, MD https://www.youtube.com/watch?v=WdtM0CA-17A Topic: Demystifying
hunter5582
in
MPN Voice
2 years ago
Possible causes that could have triggered my CLL
I'm trying to figure out what was the cause for my CLL.
It's not a sort of
[i]why me? [/i]
Or
[i]what I did wrong?[/i]
It's just a kind of scientific exploration around the possible causes of this mysterious disease, a research of confirmation from you guys, who
I'm trying to figure out what was the cause for my CLL.
It's not a sort of
[i]why me? [/i]
Or
[i]what I did wrong?[/i]
It's just a kind of scientific exploration around the possible causes of this mysterious disease, a research of confirmation from you guys, who
Nikotati
in
CLL Support
2 years ago
MY JOURNEY: COVID, EVUSHELD, PAXLOVID and CLL
I was diagnosed with Chronic
Lymphocytic
Leukemia
(CLL) in July, 2015. Started a clinical trial of Acalabrutinib (Calquence) in July, 2016 at NIH.
I was diagnosed with Chronic
Lymphocytic
Leukemia
(CLL) in July, 2015. Started a clinical trial of Acalabrutinib (Calquence) in July, 2016 at NIH.
SandiC
in
CLL Support
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
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
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
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
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