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Thank you!
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
After reading on this forum the importance of working with an MPN specialist and accessing the database provided I have changed my provider. It makes a world of difference! My new doctor confirmed the polycythemia diagnosis via bone marrow biopsy but also found No JAK2 mutation. The hydroxyurea that
Hidden
in
MPN Voice
1 year ago
essential, thrombocythemia transformation
has any one you know had leukemic transformation from having essential turn thrombocythemia
has any one you know had leukemic transformation from having essential turn thrombocythemia
Meeileem
in
MPN Voice
1 year ago
The Role of New Technologies in Myeloproliferative Neoplasms
I was reviewing some of the items in my bookmarked resources and came across this article from 2019. It was worth a reread. The article is a literature review and has some very interesting references regarding various issues related to MPNs, including information about the three driver mutations.
I was reviewing some of the items in my bookmarked resources and came across this article from 2019. It was worth a reread. The article is a literature review and has some very interesting references regarding various issues related to MPNs, including information about the three driver mutations.
hunter5582
in
MPN Voice
1 year ago
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Pelabresib in Combination With Ruxolitinib for Myelofibrosis
“To our knowledge, the MANIFEST trial in JAKi treatment-naïve patients is the first study with a rational combination of BETi pelabresib and ruxolitinib that showed clinically meaningful durable improvements in splenomegaly and symptoms, was associated with biomarker findings indicating potential disease
“To our knowledge, the MANIFEST trial in JAKi treatment-naïve patients is the first study with a rational combination of BETi pelabresib and ruxolitinib that showed clinically meaningful durable improvements in splenomegaly and symptoms, was associated with biomarker findings indicating potential disease
Manouche
in
MPN Voice
1 year ago
Relapsed CLL: New Approaches Prolong Survival
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Dr Furman says that genetically unstable CLL patients need a combination therapy approach to treatment irrespective of MRD assessment results. This is only a short read and Dr Furman's opinion is always worth taking note of. In case it’s behind a paywall, here is the article in full. Credit to
Jm954
Administrator
in
CLL Support
1 year ago
Expression of TCL1A gene is found to drive onset of blood cancer
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
[i]One of the causes of blood cancer is non-inherited mutations in blood stem cells that can lead to the cancerous growth of abnormal cells. Reporting in Nature, scientists now suggest that targeting a gene called TCL1A may be able to suppress such growth and decrease the risk of blood cancer....[/i]
bennevisplace
in
CLL Support
1 year ago
Pegasus side effects episode 2!
I gave my concerns about increasing the dose when I can’t tolerate the side effects at 90mcg & was told if I can’t tolerate them I’d need to move onto hydroxy, with an added discussion that pegasys Is preferred for under 60s & there is a risk of PV developing into
leukaemia
on hydroxy.
I gave my concerns about increasing the dose when I can’t tolerate the side effects at 90mcg & was told if I can’t tolerate them I’d need to move onto hydroxy, with an added discussion that pegasys Is preferred for under 60s & there is a risk of PV developing into
leukaemia
on hydroxy.
Lilliegarden
in
MPN Voice
1 year ago
Help understanding my BMB results
Just an update, I have received my post clinic letter from my consultant and the results of the genetic tests are now in. CALR mutated 9 no deletion- neither type 1 nor type 2 ( probably best described as type 2 like) Post ET MF on bone marrow - CALR, IDH2, TET2 mutation s and no copy number abnormalities
Just an update, I have received my post clinic letter from my consultant and the results of the genetic tests are now in. CALR mutated 9 no deletion- neither type 1 nor type 2 ( probably best described as type 2 like) Post ET MF on bone marrow - CALR, IDH2, TET2 mutation s and no copy number abnormalities
UKZA
in
MPN Voice
1 year ago
Places available today 3.30pm GMT - WEBINAR - UK employment rights
Hi everyone this afternoon
Leukaemia
Care and ACAS are providing an information webinar to inform blood cancer patients of employment rights.
Hi everyone this afternoon
Leukaemia
Care and ACAS are providing an information webinar to inform blood cancer patients of employment rights.
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
Besremi Titration Questions
I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks
I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks
RyanCB
in
MPN Voice
1 year ago
Spotlight on CLL - Nicole Lamanna, MD Wednesday May 24, 2023 1:00 PM to 2:30 PM EDT- sponsored by LLS- USA but open to all
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
Unlike other webinars I have posted recently, this should be easy to understand, especially for newly diagnosed and those not familiar with Med-Speak. Dr. Lamanna has a track record of explaining CLL and side effects, with a simple, caring & warm style. - Len - Nicole Lamanna, MD Director, Chronic
lankisterguy
Volunteer
in
CLL Support
1 year ago
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Open Registration April 27 12:00-1:00PM ET
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
Advances in Chronic Lymphocytic Leukemia: A Master Class for the Community Multidisciplinary Team Live Simulcast | Register now for this interactive CME/CE/CPE-certified workshop to gain expert insight on current best practices and emerging strategies for advances in chronic lymphocytic leukemia
lankisterguy
Volunteer
in
CLL Support
1 year ago
My chemo experience
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
I started with fludarabine and rituximab which wasn't great. I had feelings of hot and cold, spots before my eyes, vertigo and blacking out. My haematologist was there in minutes, lowered my dose and I was able to complete the course over 6 hours without further adverse effects. Subsequent treatments
kiwiCanuck
in
CLL Support
1 year ago
New and Emerging Treatments for Newly Diagnosed and R/R CLL/SLL: Targeted Inhibitors - Dr. Susan O'Brien
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
This webcast on new and emerging treatments for newly diagnosed and R/R CLL/SLL with a focus on targeted inhibitors, presented by Dr. Susan O'Brien is intended for medical professionals and uses moderate "Med-Speak." So only recommended for those accustomed to the medical language. But if you can follow
lankisterguy
Volunteer
in
CLL Support
1 year ago
Passing it on.
I was wondering if
leukaemia
can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
I was wondering if
leukaemia
can be hereditary. I was diagnosed with CLL 3 years ago, my wife died from AML and the thought of my children being susceptible crossed my mind. I did ask Doctor Google the question but it seems the jury is out on that subject.
Bigglesworth
in
CLL Support
2 years ago
Are you able to help?
Hi all, As a
leukaemia
patient, have you been impacted by the UK’s cost of living crisis?💡📈 If so, it would be a huge help to us if you could complete our survey and tell us how the cost-of-living crisis has impacted you as a
leukaemia
patient. Why?
Hi all, As a
leukaemia
patient, have you been impacted by the UK’s cost of living crisis?💡📈 If so, it would be a huge help to us if you could complete our survey and tell us how the cost-of-living crisis has impacted you as a
leukaemia
patient. Why?
LCAlex
in
Leukaemia Support
2 years ago
People's lived experience of complete remission after long illness?
Of course, since I've had
leukaemia
for 14 years + immune-suppressing treatment + a secondary cancer I'm always mildly concerned about a new malignancy - but no firm evidence of that at the moment. (My GP has sent photos of a dark mark on a toenail off for second opinion though ...).
Of course, since I've had
leukaemia
for 14 years + immune-suppressing treatment + a secondary cancer I'm always mildly concerned about a new malignancy - but no firm evidence of that at the moment. (My GP has sent photos of a dark mark on a toenail off for second opinion though ...).
Greyhound23
in
CLL Support
2 years ago
Interesting
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
Clinical Review of ropeginterferon alfa-2b Suggests Amended Dosing Schedule May Support Improved Clinical Outcomes in Polycythemia Vera Review of studies published in Frontiers in Oncology highlights dosing considerations that may help more patients achieve earlier complete hematological response
wateron
in
MPN Voice
2 years ago
Essential Thrombocythaemia and Pneumococcal vaccine safe to take?
hello my husband is 36 with Essential Thrombocythaemia Calr type 1 and on aspirin only he has received a letter for the Pneumococcal vaccine but I’m wondering is it safe to take with having ET?
hello my husband is 36 with Essential Thrombocythaemia Calr type 1 and on aspirin only he has received a letter for the Pneumococcal vaccine but I’m wondering is it safe to take with having ET?
Green1988
in
MPN Voice
2 years ago
BTK Inhibitor Therapy for CLL: An International Perspective - Stephan Stilgenbauer, MD
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
BTK Inhibitor Therapy for CLL: An International Perspective Stephan Stilgenbauer, MD Expert Commentary ClinicalThought™ - Targeted therapies, including BTK inhibitors and combinations incorporating BCL-2 inhibitors, have replaced chemoimmunotherapy as the standard of care for treating CLL.
lankisterguy
Volunteer
in
CLL Support
1 year ago
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