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One for Prof Harrison via Maz?
While I was having my transfusion today I overheard a nurse telling a patient that if they were on any type of immunosuppressive treatment that that should be discontinued before receiving covid vaccine. I am taking 20mg Ruxolitinib twice daily and have a consistently low white count with neutrophils
While I was having my transfusion today I overheard a nurse telling a patient that if they were on any type of immunosuppressive treatment that that should be discontinued before receiving covid vaccine. I am taking 20mg Ruxolitinib twice daily and have a consistently low white count with neutrophils
beetle
in
MPN Voice
4 years ago
Surviving Covid
Hi everyone. I have PV and early MF. I take Ruxolitinib . I am 44. I have shielded as many of us have. As a family with 3 children, we have been very careful to avoid places and people but yet contracted Covid the week before Christmas. I am still recovering from terrible fatigue and also developed panic
Hi everyone. I have PV and early MF. I take Ruxolitinib . I am 44. I have shielded as many of us have. As a family with 3 children, we have been very careful to avoid places and people but yet contracted Covid the week before Christmas. I am still recovering from terrible fatigue and also developed panic
MamPRV
in
MPN Voice
4 years ago
Friday 15th January, 2pm Webinar - COVID-19 vaccines – your questions answered
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Two of our partner charities - Leukaemia Care and Lymphoma Action are to host this joint webinar for those living with lymphoma and leukaemia.
Date: Friday 15 January
Time: 2pm
The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with
Jm954
Administrator
in
CLL Support
4 years ago
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Friday 15th January, 2pm Webinar - COVID-19 vaccines – your questions answered
Leukaemia Care is working with Lymphoma Action to host this joint webinar for those living with lymphoma and leukaemia. Date: Friday 15 January Time: 2pm The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with blood cancer – considered to amongst
Leukaemia Care is working with Lymphoma Action to host this joint webinar for those living with lymphoma and leukaemia. Date: Friday 15 January Time: 2pm The news of a coronavirus (COVID-19) vaccines being made available has been widely welcomed. However, those with blood cancer – considered to amongst
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Wednesday 13th January 2021 Webinar- Survivorship and late effects of acute leukaemia
Date: Wednesday 13th January 2021 Time: 9:30am Guests: Dr Amit Patel, Consultant Haematologist, Cellular Therapies and Transplantation, The Christie NHS Foundation Trust Dr Steven Knapper, Clinical Senior Lecturer in Haematology and consultant haematologist, University Hospital of Wales. Kate Stallard
Date: Wednesday 13th January 2021 Time: 9:30am Guests: Dr Amit Patel, Consultant Haematologist, Cellular Therapies and Transplantation, The Christie NHS Foundation Trust Dr Steven Knapper, Clinical Senior Lecturer in Haematology and consultant haematologist, University Hospital of Wales. Kate Stallard
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation & De Novo Large B-Cell Lymphoma
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation and De Novo Large B-Cell Lymphoma with impressive results. In this ASH 2020 In this video Dr. Mato tells us that his clinical trial introduces the concept of “synthetic lethality,” where multiple
Richter's Syndrome! One pill, Triple Combination Therapy is in clinical trial for Richter’s Transformation and De Novo Large B-Cell Lymphoma with impressive results. In this ASH 2020 In this video Dr. Mato tells us that his clinical trial introduces the concept of “synthetic lethality,” where multiple
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Bladder Cancer with CLL
CLL since 2012 ( Ibrutinib 5 years , Gayzva 6 months , Acalabrutinib 2 years ) now bladder cancer , high grade , no wall penetration .... advised to take BCG for 6 weeks every 3 months for a year ... anyone shed light on what I can physically expect from the BCG ?
CLL since 2012 ( Ibrutinib 5 years , Gayzva 6 months , Acalabrutinib 2 years ) now bladder cancer , high grade , no wall penetration .... advised to take BCG for 6 weeks every 3 months for a year ... anyone shed light on what I can physically expect from the BCG ?
fish61
in
CLL Support
4 years ago
Covid 19 Vaccine
I see on the list of priorities for the vaccine, blood cancers have been mentioned, but it says like leukaemia, myeloma, lymphoma and the bone marrow. There is never any mention of MPNs. Has anyone found any concrete evidence that we will be included in this priority list. Hope you are all keeping safe
I see on the list of priorities for the vaccine, blood cancers have been mentioned, but it says like leukaemia, myeloma, lymphoma and the bone marrow. There is never any mention of MPNs. Has anyone found any concrete evidence that we will be included in this priority list. Hope you are all keeping safe
mark382
in
MPN Voice
4 years ago
myelofibrosis and headaches
hello everyone. i was diagnosed in sept. with myelofibrosis and am jak2 positive. i am 49. i have been having some pretty wicked headaches and was wondering what would be the best remedy. i have been on jakafi for 4 weeks and it has helped my bone pain tremendously and am less fatigued. i have gone
hello everyone. i was diagnosed in sept. with myelofibrosis and am jak2 positive. i am 49. i have been having some pretty wicked headaches and was wondering what would be the best remedy. i have been on jakafi for 4 weeks and it has helped my bone pain tremendously and am less fatigued. i have gone
runnerbird71
in
MPN Voice
4 years ago
Interferon-Alpha Reduces Myelofibrosis Risk, Mortality Rate in Low- and High-Risk Polycythemia Vera
“In an intent-to-treat analysis, IFN was associated with improved OS in high-risk PV, with a 20-year OS probability of 66% in the IFN group, 40% in the HU group, and 14% in the phlebotomy-only group. The rate of myelofibrosis-free survival (MFS) of high-risk patients was similarly higher in patients
“In an intent-to-treat analysis, IFN was associated with improved OS in high-risk PV, with a 20-year OS probability of 66% in the IFN group, 40% in the HU group, and 14% in the phlebotomy-only group. The rate of myelofibrosis-free survival (MFS) of high-risk patients was similarly higher in patients
Manouche
in
MPN Voice
4 years ago
Richter Syndrome
Hello Everybody, My boyfriend was just diagnosed with Richter Syndrome about 2 hours ago. Those have been 2 hours where I have felt myself losing my mind! They told him not to google anything in regards to the diagnosis as they are doing more tests. Of course, I didn’t listen! Everything I have read
Hello Everybody, My boyfriend was just diagnosed with Richter Syndrome about 2 hours ago. Those have been 2 hours where I have felt myself losing my mind! They told him not to google anything in regards to the diagnosis as they are doing more tests. Of course, I didn’t listen! Everything I have read
Bee4028
in
CLL Support
4 years ago
Ropeginterferon-Treated Patients With Polycythemia Vera Significantly More Likely to Be Phlebotomy Free at 5 Years
« Additional results showed a pronounced difference in the molecular response (JAK2V617F burden) between the 2 treatment arms, with “striking superiority of ropeginterferon at month 60,” Gisslinger noted. Specifically, the median JAK2V617F allele burden at year 5 was 8.5 in the ropeginterferon arm vs
« Additional results showed a pronounced difference in the molecular response (JAK2V617F burden) between the 2 treatment arms, with “striking superiority of ropeginterferon at month 60,” Gisslinger noted. Specifically, the median JAK2V617F allele burden at year 5 was 8.5 in the ropeginterferon arm vs
Manouche
in
MPN Voice
4 years ago
CEV letter v2.0, NI edition.
So lots of posts on here from people getting CEV letters again. Mostly England I think however our wee country got to deal with the serious arguments about transfer tests (I guess they are, not if you're youngest is 20 though) before they issue the guidance and letters. Just yesterday, Friday 8th I received
So lots of posts on here from people getting CEV letters again. Mostly England I think however our wee country got to deal with the serious arguments about transfer tests (I guess they are, not if you're youngest is 20 though) before they issue the guidance and letters. Just yesterday, Friday 8th I received
Belfastbees
in
CLL Support
4 years ago
#CLLSociety VACCINE CANDIDATE COVID-19 Vaccine News Pfizer and BioNTech’s big news this week set the CLL Community abuzz with hope!
As this is not a “live” vaccine, but rather a novel “RNA” vaccine, it should theoretically be safe for chronic
lymphocytic
leukemia
patients, though that is not yet proven. The big question remains: Will it be effective? Dr.
As this is not a “live” vaccine, but rather a novel “RNA” vaccine, it should theoretically be safe for chronic
lymphocytic
leukemia
patients, though that is not yet proven. The big question remains: Will it be effective? Dr.
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
ASH 2020 | Timing of driver mutations and clonal dynamics in MPNs: a new paradigm for blood cancer development
Post by MPN-MATE Admin » Fri Dec 18, 2020 12:27 am Evening all... This short You Tube is full of some very interesting theories, and one in particular that I know to be factual in my own case... ... that I have had my MPN for many years before diagnosis. Fascinating insight to be coming from a Specialist
Post by MPN-MATE Admin » Fri Dec 18, 2020 12:27 am Evening all... This short You Tube is full of some very interesting theories, and one in particular that I know to be factual in my own case... ... that I have had my MPN for many years before diagnosis. Fascinating insight to be coming from a Specialist
socrates_8
in
MPN Voice
4 years ago
RUXCOVID study (NCT04362137) ~ FAILED TO BENEFIT
Post by MPN-MATE Admin » Wed Dec 16, 2020 10:41 pm [i]Ruxolitinib fails to provide clinical benefit in patients with COVID-19-related cytokine storm[/i] [i]By Gizem Karakuleli Dec 15, 2020[/i] Evening all... :D Personally, I have found the commercial aspects of Big Pharma's race to earn the Prize
Post by MPN-MATE Admin » Wed Dec 16, 2020 10:41 pm [i]Ruxolitinib fails to provide clinical benefit in patients with COVID-19-related cytokine storm[/i] [i]By Gizem Karakuleli Dec 15, 2020[/i] Evening all... :D Personally, I have found the commercial aspects of Big Pharma's race to earn the Prize
socrates_8
in
MPN Voice
4 years ago
CLL Society interview with Dr. Sameer Parikh: MBL is present in 5% of the population over age 40. Most will not develop CLL
Read here: https://cllsociety.org/2020/10/ash-2019-dr-sameer-parikh-on-monoclonal-b-cell-lymphocytosis-a-precursor-to-chronic-
lymphocytic
-
leukemia
-cll/
Read here: https://cllsociety.org/2020/10/ash-2019-dr-sameer-parikh-on-monoclonal-b-cell-lymphocytosis-a-precursor-to-chronic-
lymphocytic
-
leukemia
-cll/
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
An Explosion of Options for MPNs Forthcoming
« The Virtual ASH Meeting was just held in early December. It demonstrated that although we missed the in-person interactions, the progress in the world of hematology was exceptional! Forward progress for Myeloproliferative neoplasms (myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia
« The Virtual ASH Meeting was just held in early December. It demonstrated that although we missed the in-person interactions, the progress in the world of hematology was exceptional! Forward progress for Myeloproliferative neoplasms (myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia
Manouche
in
MPN Voice
4 years ago
RUXOLITINIB & Pulmonary Hypertension (PH)
Post by MPN-MATE Admin » Mon Dec 14, 2020 9:34 am Morning all... :D Lately, or perhaps I should have said, more recently while cycling... I have noticed days when my heart rate really blows out past previous maximums... Some days, I would feel in awesome ability after a ride, but then others, (&
Post by MPN-MATE Admin » Mon Dec 14, 2020 9:34 am Morning all... :D Lately, or perhaps I should have said, more recently while cycling... I have noticed days when my heart rate really blows out past previous maximums... Some days, I would feel in awesome ability after a ride, but then others, (&
socrates_8
in
MPN Voice
4 years ago
Picture of blast cell
I took this picture from a cat who had leukemia. Their blood cells are identical to ours. As you can see the blast cell is huge compared to the other white blood cells. That is because it is immature and has been released from the bone marrow too soon. Blasts should not be seen circulating in the blood
I took this picture from a cat who had leukemia. Their blood cells are identical to ours. As you can see the blast cell is huge compared to the other white blood cells. That is because it is immature and has been released from the bone marrow too soon. Blasts should not be seen circulating in the blood
clubdino
in
MPN Voice
4 years ago
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