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Chorea and PV
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
Hi - I don't post very often but I thought that this might be worthy of sharing. It is second hand experience as it is my mother who suffers with Polycythaemia vera (PV). She is 86 and is taking Hydroxycarbamide for PV (amongst other medications). Around a couple of years ago my mother started to experience
PFR1937
in
MPN Voice
1 year ago
Discovery of a signaling feedback circuit that defines interferon responses in myeloproliferative neoplasms- Published: 01 April 2022
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
This gets a little deep, but nonetheless may explain some things:
Abstract
Interferons (IFNs) are key initiators and effectors of the immune response against malignant cells and also directly inhibit tumor growth. IFNα is highly effective in the treatment of myeloproliferative neoplasms (MPNs
PhysAssist
in
MPN Voice
1 year ago
Loxo305 trial
/Small
Lymphocytic
Lymphoma.
/Small
Lymphocytic
Lymphoma.
Alex830
in
CLL Support
2 years ago
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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
Dosing Jakafi
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
After 2 years on Hydrea for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily. I’ve been feeling
George1976
in
MPN Voice
1 year ago
'Astonishing' Results: Skip Salvage Chemo, Go Straight to HSCT from ASH 2022 [For Refractory AML/Relapsed AML]
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
NEW ORLEANS — Investigators confessed to being "astonished" by results of a randomized trial showing that patients with acute myeloid leukemia who have a poor response following induction therapy do just as well going on to immediate allogeneic transplant as they would if they had received an intensive
PhysAssist
in
MPN Voice
1 year ago
mood and cll
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Isn't it interesting how when you are in your disease treatment period, you just are a warrior that gets things done! At least this has been my experience with O and V trial. It was time consuming and quite a process, but I focused and just did what I had to do. Fast forward to my LAST bone marrow
Gardengirl44
in
CLL Support
1 year ago
Calquence / acalabrutinib and Brukinsa / zanubrutinib Adverse Event Comparison for Chronic Lymphocytic Leukaemia / CLL from clinical trials
Now that we have a growing choice of BTK inhibitor treatment options, naturally the question is which one is better? Based on this meta-analysis study of the incidence of 84 Adverse Events (AEs) reported in 61 clinical trials involving nearly 7,000 patients, that question should be better framed as
Now that we have a growing choice of BTK inhibitor treatment options, naturally the question is which one is better? Based on this meta-analysis study of the incidence of 84 Adverse Events (AEs) reported in 61 clinical trials involving nearly 7,000 patients, that question should be better framed as
AussieNeil
Partner
in
CLL Support
1 year ago
Shocking Price of Jakafi
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. I have been having lots of side effects from Hydrea, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which
dogsandhorses
in
MPN Voice
1 year ago
Full blown PV now
I was diagnosed with Jak2+ PV back in January 2020. At that time, I didn't have high RBC, Hemaglobin, or hematocrit. I had high platelets, high WBC, basophilia, and eosinophilia. My hematologist said she was calling it PV rather than ET due to the high counts other than my platelets. She was completely
I was diagnosed with Jak2+ PV back in January 2020. At that time, I didn't have high RBC, Hemaglobin, or hematocrit. I had high platelets, high WBC, basophilia, and eosinophilia. My hematologist said she was calling it PV rather than ET due to the high counts other than my platelets. She was completely
Lena70
in
MPN Voice
1 year ago
IDH2 R172 Linked With Improved Survival in Myeloid Neoplasms from April 14, 2023 Hematology Advisor- More r/t AML than MPNs- look below it..
Among patients with myeloid neoplasms
including
acute myeloid leukemia (AML), IDH2 R172 mutations (mR172) appear to be linked with improved overall survival, and moreover represent a distinct clinical disease subtype, according to research published in the American Journal of Clinical Pathology
Among patients with myeloid neoplasms
including
acute myeloid leukemia (AML), IDH2 R172 mutations (mR172) appear to be linked with improved overall survival, and moreover represent a distinct clinical disease subtype, according to research published in the American Journal of Clinical Pathology
PhysAssist
in
MPN Voice
1 year ago
Jakafi’s generics: Possible delay in the entry?
»The patent expiration in mid-2028 might be the most significant obstacle to JAKAFI’s supremacy in the polycythemia vera treatment market. To address this, Incyte introduced the LIMBER (Leadership in MPNs and GVHD BEyond Ruxolitinib) life-cycle management initiative, which was meant to explore different
»The patent expiration in mid-2028 might be the most significant obstacle to JAKAFI’s supremacy in the polycythemia vera treatment market. To address this, Incyte introduced the LIMBER (Leadership in MPNs and GVHD BEyond Ruxolitinib) life-cycle management initiative, which was meant to explore different
Manouche
in
MPN Voice
1 year ago
Research identifies new target that may prevent blood cancer Published April 13, 2023 Originally published on MedicalXpress Breaking News
An international coalition of biomedical researchers co-led by Alexander Bick, MD, Ph.D., at Vanderbilt University Medical Center has determined a new way to measure the growth rate of precancerous clones of blood stem cells that one day could help doctors lower their patients' risk of blood cancer.
An international coalition of biomedical researchers co-led by Alexander Bick, MD, Ph.D., at Vanderbilt University Medical Center has determined a new way to measure the growth rate of precancerous clones of blood stem cells that one day could help doctors lower their patients' risk of blood cancer.
PhysAssist
in
MPN Voice
1 year ago
Ruxolitinib and constipation
I've been on ruxolitinib for about eight months and have just realized that constipation is becoming a problem for me. Looking back, this may have started about four months ago but since I've been dealing with irritable bowel syndrome for more than 50 years, I was slow to recognize it as something new
I've been on ruxolitinib for about eight months and have just realized that constipation is becoming a problem for me. Looking back, this may have started about four months ago but since I've been dealing with irritable bowel syndrome for more than 50 years, I was slow to recognize it as something new
sbs_patient
in
MPN Voice
1 year ago
Really??: Pruritus May Mark Severe Symptomology in Myeloproliferative Neoplasms"- From "Hematology Advisor"- Some surprising findings...
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
PhysAssist
in
MPN Voice
1 year ago
CLL Advocates Network upcoming webinars. This one 7th of December 17:00 - 18:00 GMT
leukemia
(CLL) is treated?”
leukemia
(CLL) is treated?”
Irishcll
in
CLL Support
2 years ago
Anyone else being seen at Royal Marsden Sutton?
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area. My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months.
Rachelthepotter
in
MPN Voice
1 year ago
Hematocrit question
Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while being on a long flight. Asked my Dr & she approved it Wondering if there would be any concern if the phlebotomy would lower my hematocrit to 41 or
Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while being on a long flight. Asked my Dr & she approved it Wondering if there would be any concern if the phlebotomy would lower my hematocrit to 41 or
wateron
in
MPN Voice
1 year ago
Rux and IFN combo therapy
This recent report points to benefits of combining Rux and IFN. Of particular interest is the low doses that were enabled toward the end. -Notable: "The JAK2V617F allele burden was significantly reduced 3 months after the start of treatment, and continued to decline from a median of 47% to 6%." In
This recent report points to benefits of combining Rux and IFN. Of particular interest is the low doses that were enabled toward the end. -Notable: "The JAK2V617F allele burden was significantly reduced 3 months after the start of treatment, and continued to decline from a median of 47% to 6%." In
EPguy
in
MPN Voice
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
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