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Anyone out there living with Polycythaemia Rubra Vera + Multiple Myeloma?
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
Does anybody out there have more My friend has PRV and MM which appear to be unrelated. Polycythaemia Rubra Vera since c2005 (well-controlled with Hydrea) Multiple Myeloma (more specifically: Multiple Plasmacytoma) diagnosed 2018/2019. PRV remains in remission but MM relapsed some months ago.
SolasChoir
in
MPN Voice
2 years ago
Covid Vax Long Term T-cell Immunity
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
I posted this in a thread, but it seems worth a top post with recent info as there are many discussions on the vaxes, immunity and boosters. "Acquired Immunity" occurs by vax or infection. A large portion of the world has acquired immunity and likely T-cell protection. We saw last Spring in Hong
EPguy
in
MPN Voice
2 years ago
Dr Mesa on MF prognostics, Rux and SCT
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
Some detailed info in Dr Mesa's thoughts in a 2020 interview I came across: -For some MF patients Rux is working well and long term: <<There are patients from the phase 1 study of ruxolitinib [i](this dates to early as 2007) [/i]at our centers that are still on the therapy. These are individuals that
EPguy
in
MPN Voice
2 years ago
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LET’S GET READY FOR WORLD CLL DAY ON 1 SEPTEMBER!
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
has anybody had blood test results with 35% elevated urea level?
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
has anybody had blood test results with 35% elevated urea level and the doctors said to ignore it. The Creatinine & EGFR that matters. thank you for sharing your thoughts. Kind regards.
catherine1712
in
LUPUS UK
2 years ago
PI3K inhibitors (idelalisib,copanlisib, duvelisib, parsaclisib, umbralisib, zandelisib, ACP-319) in CLL: where do we go from here?
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
CLLerinOz
Administrator
in
CLL Support
2 years ago
A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
Hello The paper below recently came out in May. I thought member would be interested. Apologies if this is old news. “A randomized phase 3 trial of interferon-α vs hydroxyurea in polycythemia vera and essential thrombocythemia” It is freely downloadable from PubMed at https://pubmed.ncbi.nlm.nih.gov
LongETinUS
in
MPN Voice
2 years ago
Newly diagnosed Et Edinburgh
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Hi is anyone from Edinburgh that has been diagnosed with Essential Thrombocythaemia Calr mutation?
Green1988
in
MPN Voice
2 years ago
starting W&W
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
So I recently had two visits at the Mayo Clinic and had genetic testing along with ct scans. I’m “normal” karyotype, unmutated igh, unmutated tp53. I’m being transferred from my hematologist to a Cll specialist and in general…I feel pretty lucky. One thing my doc said though was that I was likely to
Snakejaw
in
CLL Support
2 years ago
Jakafi
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Mich1234567
in
MPN Voice
2 years ago
Relapse of CLL
Has anyone who had relapsed CLL had strong CLL symptoms prior to that diagnosis? I have blood work in a few weeks but my CLL symptoms have been very prevalent for a month now, and was curious if those were signs of having the CLL diagnosis again?
Has anyone who had relapsed CLL had strong CLL symptoms prior to that diagnosis? I have blood work in a few weeks but my CLL symptoms have been very prevalent for a month now, and was curious if those were signs of having the CLL diagnosis again?
Jvander11
in
CLL Support
2 years ago
Night cramps
I have been having horrendous leg cramps every night - they move around from ankle to leg front or back of leg. My feet go into spasm. I have Myelofibrosis and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
I have been having horrendous leg cramps every night - they move around from ankle to leg front or back of leg. My feet go into spasm. I have Myelofibrosis and am on Ruxolitinib. I am not getting much sleep. Can anyone help? SkipperL
skipperL
in
MPN Voice
2 years ago
Could you share your leukaemia diagnosis story?
Hi everyone, Alex here from Leukaemia Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot Leukaemia campaign, which aims to raise awareness of the signs and symptoms of leukaemia. In order to raise awareness, we are looking for leukaemia stories to share throughout
Hi everyone, Alex here from Leukaemia Care. 👋 September is Blood Cancer Awareness Month and we will be running our Spot Leukaemia campaign, which aims to raise awareness of the signs and symptoms of leukaemia. In order to raise awareness, we are looking for leukaemia stories to share throughout
LCAlex
in
Leukaemia Support
2 years ago
Hurray, Three Cheers for Venclexta & Rituxan
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
After 10 years, 5 months and 24 days since a Stage IV diagnosis of CLL, including 8 rounds of chemo/immunotherapy, I have been found to have no residual cancer cells after a bone marrow biopsy at Dana Farber on July 21, 2022! Three cheers for 6 doses of Rituxan and 24 months of Venclexta!! I have
KevinCLLITP
in
CLL Support
2 years ago
Advanced blood tests at 3 months after diagnosis.
Since the rush at the hematologists at the clinic where I will possibly be treated is sometimes big and now is the vacation season, I could not make an appointment earlier than August 2nd to see my hematologist (then he returns from vacation possibly). So I decided to get ahead of the events and show
Since the rush at the hematologists at the clinic where I will possibly be treated is sometimes big and now is the vacation season, I could not make an appointment earlier than August 2nd to see my hematologist (then he returns from vacation possibly). So I decided to get ahead of the events and show
Yalokin
in
CLL Support
2 years ago
EPO levels in ET and prognostics
We’ve seen some discussion of EPO levels and PV Dx. I am one of the members who has an unspecific mix of ET/PV and curious about EPO. I found a related report. Quick summary of the report: -Low EPO is not unusual in ET -Low EPO ET has lower MF transformation -Low EPO ET has higher PV progression
We’ve seen some discussion of EPO levels and PV Dx. I am one of the members who has an unspecific mix of ET/PV and curious about EPO. I found a related report. Quick summary of the report: -Low EPO is not unusual in ET -Low EPO ET has lower MF transformation -Low EPO ET has higher PV progression
EPguy
in
MPN Voice
2 years ago
Тhe first study to provide a comprehensive description of the epidemiology and global burden of CLL worldwide
quote CLL-related incidence, death, DALY burden and corresponding change trends CLL-related incidence and its change trends Globally, during the last 30 years, CLL-related incidence cases increased significantly from 40,537 in 1990 to 103,467 in 2019, with age-standardized incidence rate (ASIR) rising
quote CLL-related incidence, death, DALY burden and corresponding change trends CLL-related incidence and its change trends Globally, during the last 30 years, CLL-related incidence cases increased significantly from 40,537 in 1990 to 103,467 in 2019, with age-standardized incidence rate (ASIR) rising
Yalokin
in
CLL Support
2 years ago
very low ferritin with high iron saturation
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
I’m CLL , on Imbruvica since December 2022. Just received new labs. ferritin 13.00 ng/ml (normal range 24-336) Iron saturation 41% (normal range It appears contradictory to me. Iron level normal Iron binding capacity normal. Any insight is appreciated. Thanks
mr1971
in
CLL Support
2 years ago
Besremi and Hematocrit Control
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Closing in on five months on Besremi and my WBC and PLT's are now in the "normal" range, but HCT control continues to be elusive. I did get a 250ml PB on May 21, hoping that along with higher dose of Besremi (145) would knock the HCT down. The result? Exactly the same. 43.6 (My goal is 42 or lower
Elizka
in
MPN Voice
2 years ago
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis..
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I think finally a very good successor for Hydrea.. This drug is not carcinogenetic and induces the mpn mutations to cell death. (See conference posters downloadlinks) on: https://imagobio.com/our-science/#pubs
Paul1993et
in
MPN Voice
2 years ago
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