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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
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
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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
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Stem Cell Transplant-update
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
Well, I have been below the radar lately but it’s time to update you all. I was diagnosed moth PMF in April 2020 and declined quite quickly. I have CALR with ASXL1 mutation. I went through rapidly increasing dose of Peg INF but moved over to Ruxolitinib when my platelet count dropped. The rux helped
ConniesDad
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
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
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
MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
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
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
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
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
Visit with new Hem/Onc Dr went well!
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Hi Friends, I had my first visit with my new local doctor. He is Associate Head of Stem Cell Transplant Dept with Ochsner in Louisiana. He does not treat any cancers other than blood. He listened and verbalized understanding that my previous Dr’s were not a fit for me. He reviewed my BMB from Vanderbilt
Wewo01
in
MPN Voice
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
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
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
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