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Unprecedented Case: Myelofibrosis Reverts to Polycythemia Vera Phenotype
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
»In a rare and unprecedented case, a 72-year-old man diagnosed with JAK2V617F mutated polycythemia vera (PV) experienced a transformation to myelofibrosis (MF) but later reverted to a PV phenotype. The study was presented at the International Congress of Myeloproliferative Neoplasms held November 2-
Manouche
in
MPN Voice
8 months ago
uMRD 6
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
skipro
in
CLL Support
3 months ago
Background
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
I appreciate the interest in knowing more of my "back story" and my CLL "markers" history. What bothers me is a bias toward the pharmaceutical approach to treating CLL that is characterized as the "best" approach despite failed and incompetent pharmaceutical interventions, highlighted in the incompentently
leftysfsl1945
in
CLL Support
3 months ago
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Antiinflammatory medications with Jakafi
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
sbs_patient
in
MPN Voice
8 months ago
Largest real world study of acalabrutinib and ibrutinib over 3 years, shows acalabrutinib has improved discontinuation rates
Coincidentally later today, Dr Toby Eyre tweeted about the
First comparative effectiveness study of acalabrutinib (Calquence) and ibrutinib (Imbruvica) in real-world patients with chronic
leukemia
.
Coincidentally later today, Dr Toby Eyre tweeted about the
First comparative effectiveness study of acalabrutinib (Calquence) and ibrutinib (Imbruvica) in real-world patients with chronic
leukemia
.
AussieNeil
Partner
in
CLL Support
10 months ago
Lefty
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
I earned a degree in Electrical Engineering from the University of California, Berkeley. Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful. During 2015 I started seeing a Naturopathic doctor and became impressed with
leftysfsl1945
in
CLL Support
3 months ago
first line treatment with bendamustin and rithoximab
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
I had 6 month first line treatment with bendamustin and rithoximab in 2022 september ended. .when i start my treatment my numbers was very high wbc 146 rbc was low in 2022 janeuary the numbers was wbc126 rbc 3.23 hgb 10.9 plt 135 LDh 920. because of high in ldh one of recent doctor said may be
09123836306
in
CLL Support
3 months ago
Dr. John Allan - Chronic Lymphocytic Leukemia (CLL) Patients @Undetectable Measurable Residual Disease (MRD) after Ibrutinib Plus Venetoclax
John Allan on Outcomes for Chronic
Lymphocytic
Leukemia
(CLL) Patients with Undetectable Measurable Residual Disease (MRD) After Treatment with Ibrutinib Plus Venetoclax March 16, 2023 https://youtu.be/9f5AgEjlLTs?
John Allan on Outcomes for Chronic
Lymphocytic
Leukemia
(CLL) Patients with Undetectable Measurable Residual Disease (MRD) After Treatment with Ibrutinib Plus Venetoclax March 16, 2023 https://youtu.be/9f5AgEjlLTs?
lankisterguy
Volunteer
in
CLL Support
1 year ago
New MF drugs in development by Incye
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
Hi All, just as a quick update, Incyte has started the phase 1 trial for the CALR anyibody and they also disclosed a new potential treatment for the JAK mutation which may enter clinicial trials in the coming months which they say could also be disease modifying. See some quotes from their 3Q 2023
CanadaG
in
MPN Voice
8 months ago
Engaging Conversations: Chats with MPN Specialists
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
»Embark on a journey of enlightening dialogues surrounding Myeloproliferative Neoplasms (MPNs) with the distinguished specialists in the field. These live chats offer a unique opportunity to delve into the intricacies of Polycythemia Vera (PV) and Essential Thrombocythemia (ET) with the expertise of
Manouche
in
MPN Voice
8 months ago
Understanding PET Scan Results with CLL
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
Hello! I was diagnosed with CLL (11Q) in 2013. On Ibrutinib since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's
FlaKeys
in
CLL Support
4 months ago
Detected with CLL
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Hi , i was detected with cll in march 2021 at that time my wbc was 30k but with no symptoms so i was on wait and watch,after few months i got brain hamerroage and i was in hospital for 1 month after that i recovered but still my left side is weak , my wbc increased gradually and after 3 years it has
Kkkaaarrr
in
CLL Support
4 months ago
Metformin Use and the Risk of Myeloproliferative Neoplasms in a Danish Population Based Cohort
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
I am very curious if any MPNérs are using Metaformin and what effects they are experiencing on their MPN... See: In this study we found an inverse association between MT use and risk of MPNs indicating a potential protective effect of MT on the development of MPNs. The protective effect was most pronounced
pvdm
in
MPN Voice
8 months ago
Quercetin
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
I am taking Vimerson Health's Tumeric/Quercetin/Bromelain combination. Presently only taking the recommended two capsules per day in the morning. Been on Watch and Wait since 2019. White count is slowly creeping up (now at 30.8 - a year ago I was at 20.9). Other numbers Lymphs at #25, MCV at 96.9
CBME
in
CLL Support
4 months ago
New Jama Article to do with CLL. Audio
utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jama&utm_content=etoc&utm_term=032123 "Chronic
lymphocytic
leukemia
(CLL) affects more than 200 000 people and is associated with >4000 deaths in the US annually.
utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jama&utm_content=etoc&utm_term=032123 "Chronic
lymphocytic
leukemia
(CLL) affects more than 200 000 people and is associated with >4000 deaths in the US annually.
Horsechestnut
in
CLL Support
1 year ago
The 2024 Global Patient Survey invites CLL patients and caregivers to share their experiences
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
Every two years, the Lymphoma Coalition, a worldwide network of patient groups with a full or partial focus on providing support to lymphoma patients, including those with CLL, undertakes a
Global Patient Survey
. The 2024 survey gives you
an opportunity to share your experience with CLL
CLLerinOz
Administrator
in
CLL Support
4 months ago
Can anyone figure out my MRD
leukemia
(CLL).
leukemia
(CLL).
johnliston
in
CLL Support
1 year ago
Bone pain
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
morning all does anyone else get really uncomfortable bone pain with ET I have for years had pain in thigh and upper arm bones sometimes so sore. My discomfort now is in pelvic bones especially the bones I sit on . I think the ischial tuberosity… ? Any one else
Tipsy2023
in
MPN Voice
8 months ago
Ruxolitinib not working so well
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
I was diagnosed with Myelofibrosis Stage 2 this summer. I was put on Ruxolitinib and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet
Searcher56
in
MPN Voice
8 months ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
8 months ago
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