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pink patches on skin
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Hi I am 44 days post SCT and am at home recovering . I’m feeling quite well . I am 68 and have no other health issues . My blood counts are ok considering it’s not long since I had the transplant . haemoglobin is 94 with the help of some jabs in my stomach Platelets 61 WBC 3.8 Neutrofils
Tortina
in
MPN Voice
10 months ago
Pelabresib With Ruxolitinib Shows Improvements in Patients With JAK Inhibitor-Naïve Myelofibrosis
For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, treatment with pelabresib plus ruxolitinib was associated with durable improvements in spleen volume reduction (SVR), and other findings, in a recent phase 2 study. Study results were reported in the Journal of Clinical Oncology
For patients with myelofibrosis naïve to Janus kinase inhibitor (JAKi) therapy, treatment with pelabresib plus ruxolitinib was associated with durable improvements in spleen volume reduction (SVR), and other findings, in a recent phase 2 study. Study results were reported in the Journal of Clinical Oncology
PhysAssist
in
MPN Voice
1 year ago
FDA Issues Complete Response Letter for Ruxolitinib Extended-Release Tablets
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
PhysAssist
in
MPN Voice
1 year ago
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MPN Specialized Care and Technology: Digital Health and Symptom Management
[i]
From our friends at Patient Empowerment network.
[/i] Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join
[i]
From our friends at Patient Empowerment network.
[/i] Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Register to join
hunter5582
in
MPN Voice
1 year ago
Webinar - What You Need To Know About Polycythemia Vera
[i]From our friends at MPN Advocacy & Education International. [/i]
A Conversation with MPN Specialists - What You Need To Know About Polycythemia Vera
Wednesday, April 12, 2023 11:30am-1:00pm EST Drs. Gaby Hobbs, Mass General, and Andrew Kuykendall, Moffitt Cancer Center, will focus their
[i]From our friends at MPN Advocacy & Education International. [/i]
A Conversation with MPN Specialists - What You Need To Know About Polycythemia Vera
Wednesday, April 12, 2023 11:30am-1:00pm EST Drs. Gaby Hobbs, Mass General, and Andrew Kuykendall, Moffitt Cancer Center, will focus their
hunter5582
in
MPN Voice
1 year ago
Life beyond Myelofibrosis
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat
in
MPN Voice
1 year ago
introducing myself...
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar
in
Leukaemia Support
1 year ago
March 2023 Treatment Update Webinars
Our treatment update webinars are fast approaching! Webinar dates... THIS WEEK: ‘Latest advances in the treatment of acute myeloid leukaemia (AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic leukaemia (CLL)’ - Monday 27th @ 7pm ‘Latest
Our treatment update webinars are fast approaching! Webinar dates... THIS WEEK: ‘Latest advances in the treatment of acute myeloid leukaemia (AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic leukaemia (CLL)’ - Monday 27th @ 7pm ‘Latest
LCAlex
in
Leukaemia Support
1 year ago
Surviving in retirement
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
At age 52 I was diagnosed with stage 3 Multiple Myeloma ; after 2 bone marrow transplants in 2007 & 2009 I was able to continue my engineering job until age 65. At 66 my PSA was 3400 with Gleason score 4 ; started Docetaxel and Jevtana until July 23 ; Now on Pluvicto have 5 more treatments to
chipspesto
in
Advanced Prostate Cancer
11 months ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
in
CLL Support
1 year ago
HU and prefibrotic myelofibrosis
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
CLL Support
1 year ago
Hubby is in remission but still needs to take his A&V for an additional 8.5months.
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
Great news! Yesterday we were informed that my hubby was in remission. His has ZERO CLL in his blood and all of his lymph nodes and organs are normal. However, his BMB test reflected a MRD = 0.088%. His Dr stated that at a microscopic level there is CLL and by taking his Acalabrutinib and Venetoclax
spi3
in
CLL Support
1 year ago
Kidneys affected by Hydroxyurea?
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
Was admitted to hospital last week due to severely low sodium levels and creatinine levels were way off normal. Admitting diagnosis was acute kidney failure. Nephrologists were not sure what was causing the change in my kidney’s health. They wondered if the Hydroxyurea could be playing a part
KHardey
in
MPN Voice
1 year ago
How to pass the day
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
Eternities Day
Dawn whispers to your sleepy ears as nature awakens to herald daybreak. Quiet colours will bless your eyes, as suns soft rays do gently entice those leaden lids to rise and see the glory of my being. Stay with me awhile and see that glowing orb in haloed radiance
cycli
in
PMRGCAuk
1 year ago
Ichthyosis
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
I found some odd looking skin and discovered it was likely ichthyosis which apparently can develop in CLL patents. Anyone had any experience with this condition? Any suggestions or cautions?
Rando21
in
CLL Support
1 year ago
Managing Life With an MPN | What You Need to Know
Looks like it may be an interesting Webinar from our friends at Patient Empowerment Network. In this webinar, Dr. Raajit Rampal, an MPN specialist, will share advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr.
Looks like it may be an interesting Webinar from our friends at Patient Empowerment Network. In this webinar, Dr. Raajit Rampal, an MPN specialist, will share advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr.
hunter5582
in
MPN Voice
1 year ago
V + O , TP53 and p13
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
after a great read through the recent posts on V+ O I have some confusion 1 my doc said that with a TP 53 mutation and p13 deletion that Zanu was a better option than V+ O. Is that the consensus ? 2 It is a bit disappointing that the PFS for V+ O starts when treatment starts. Is that true of
skipro
in
CLL Support
1 year ago
start of my SCT journey
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Hi pawb I’m primary MF and Cal-r positive. I’ve been on Epo injections for 30 weeks which has kept my red cells in the high 90s. My platelets are in the low 40s. I have started to take Ruxolitinib but because of my low platelets 5mg 2 times a day. This will hopefully reduce my spleen. I have been told
Grizly
in
MPN Voice
11 months ago
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
Foundation One heme blood test results
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Hi, I wonder if somebody knows about this topic. My platelets have been high for six years; the bone marrow biopsy was incomplete because the nurse could not obtain the solid part. Anyway, the liquid aspiration was analyzed, and the bone marrow looked normal; the next-generation sequencing panel from
Cusube1967
in
CLL Support
1 year ago
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