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Enlarged Spleen
I have post Pv Myelofibrosis and am on Ruxolitinib. My blood counts are good except for a white cell count of 21. However, my “blasts” are at 18%. I am not experiencing any major symptoms except for an enlarged Spleen that currently measures 28 cams, which is large. The Ruxolitinib is not reducing it
I have post Pv Myelofibrosis and am on Ruxolitinib. My blood counts are good except for a white cell count of 21. However, my “blasts” are at 18%. I am not experiencing any major symptoms except for an enlarged Spleen that currently measures 28 cams, which is large. The Ruxolitinib is not reducing it
billybrock
in
MPN Voice
3 years ago
FDA Issues Complete Response Letter for Ropeginterferon Alfa-2b for Polycythemia Vera
The FDA has issued a complete response letter regarding the biologics license application for ropeginterferon alfa-2b-njft for the treatment of patients with polycythemia vera. The FDA has issued a complete response letter (CRL) regarding the biologics license application (BLA) for ropeginterferon alfa
The FDA has issued a complete response letter regarding the biologics license application for ropeginterferon alfa-2b-njft for the treatment of patients with polycythemia vera. The FDA has issued a complete response letter (CRL) regarding the biologics license application (BLA) for ropeginterferon alfa
JT_Marlin
in
MPN Voice
3 years ago
Interferon-Alpha Improves MFS and OS Over Standard Approaches in Polycythemia Vera
Interferon-alpha has been shown to significantly improve both myelofibrosis-free survival and overall survival over hydroxyurea and phlebotomy only in patients with polycythemia vera. Interferon-alpha (IFN) has been shown to significantly improve both myelofibrosis-free survival (MFS) and overall survival
Interferon-alpha has been shown to significantly improve both myelofibrosis-free survival and overall survival over hydroxyurea and phlebotomy only in patients with polycythemia vera. Interferon-alpha (IFN) has been shown to significantly improve both myelofibrosis-free survival (MFS) and overall survival
JT_Marlin
in
MPN Voice
3 years ago
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Fatigue
Hello everyone, I am on nPlate, I am on weekly doses and been on it for 7 weeks. I am getting periods of extreme fatigue, similar to before I was diagnosed. I am not due to have another blood test to check my platelet levels for another three weeks. Does anyone else get fatigue on nPlate? Or is
Hello everyone, I am on nPlate, I am on weekly doses and been on it for 7 weeks. I am getting periods of extreme fatigue, similar to before I was diagnosed. I am not due to have another blood test to check my platelet levels for another three weeks. Does anyone else get fatigue on nPlate? Or is
DevonMaid1
in
ITP Support Association
3 years ago
Vaccine antibodies
I know there is is some concern about recent reports that blood cancer patients are at much greater risk than solid cancer patients. My understanding is that this is related to those with very low B cells. The B cells produce antibodies, hence risk that the vaccine will be less effective. Most MPN patients
I know there is is some concern about recent reports that blood cancer patients are at much greater risk than solid cancer patients. My understanding is that this is related to those with very low B cells. The B cells produce antibodies, hence risk that the vaccine will be less effective. Most MPN patients
Paul123456
in
MPN Voice
3 years ago
NICE Recommends Acalabrutinib for treating CLL for certain groups
NICE has approved Acalabrutinib as monotherapy and is recommended as an option for untreated chronic lymphocytic leukaemia (CLL) in adults, [u]BUT ONLY IF[/u]: * there is a 17p deletion or TP53 mutation, or * there is no 17p deletion or TP53 mutation, and fludarabine plus cyclophosphamide and rituximab
NICE has approved Acalabrutinib as monotherapy and is recommended as an option for untreated chronic lymphocytic leukaemia (CLL) in adults, [u]BUT ONLY IF[/u]: * there is a 17p deletion or TP53 mutation, or * there is no 17p deletion or TP53 mutation, and fludarabine plus cyclophosphamide and rituximab
Jm954
Administrator
in
CLL Support
3 years ago
Ruxolitinib and Anaemia
I'm struggling with heavy anaemia and very very low platelets after four months of Ruxolitinib. It's not pleasant at all, and I need blood transfusions every two weeks or so. There is a danger of my ferritin levels getting too high as well. I gather this happens a lot. I understand my Hgb levels might
I'm struggling with heavy anaemia and very very low platelets after four months of Ruxolitinib. It's not pleasant at all, and I need blood transfusions every two weeks or so. There is a danger of my ferritin levels getting too high as well. I gather this happens a lot. I understand my Hgb levels might
RobinBrum
in
MPN Voice
3 years ago
Aggressive CLL - Richter's Transformation
Hi Everyone, My father was diagnosed with aggressive CLL with PLL (prolymphocytic leukemia--where the cancer is present in immature white cells) and paraimmunoblastic features in March 2020. The first-line treatment was obinutuzumab/venetoclax but after a year on this treatment, his disease has turned
Hi Everyone, My father was diagnosed with aggressive CLL with PLL (prolymphocytic leukemia--where the cancer is present in immature white cells) and paraimmunoblastic features in March 2020. The first-line treatment was obinutuzumab/venetoclax but after a year on this treatment, his disease has turned
Phs2385
in
CLL Support
3 years ago
Hydroxycarbamide, Sex and Condoms
Yesterday Maz threw a curveball into a discussion saying that the new MPN Voice leaflet (and I see McMillan Cancer Care) now command : [i]
If you are sexually active during this course of treatment, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen
Yesterday Maz threw a curveball into a discussion saying that the new MPN Voice leaflet (and I see McMillan Cancer Care) now command : [i]
If you are sexually active during this course of treatment, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen
Runner999
in
MPN Voice
3 years ago
Does the haematologist really know what he's talking about?!
So? Does he? CLL ten years, W&W. Ivig every 4 weeks. Last November, kidney biopsy. Cryoglobulinemia! So the cryo kicks up symptoms not necessarily related to CLL. Blood test numbers all roughly within perimeters, except immunoglobulin, 1.49! The haem just shrugs his shoulders when I ask cryo questions
So? Does he? CLL ten years, W&W. Ivig every 4 weeks. Last November, kidney biopsy. Cryoglobulinemia! So the cryo kicks up symptoms not necessarily related to CLL. Blood test numbers all roughly within perimeters, except immunoglobulin, 1.49! The haem just shrugs his shoulders when I ask cryo questions
happyclappy
in
CLL Support
3 years ago
Protagonist Therapeutics to Initiate Global Phase 3 Study for Rusfertide in Polycythemia Vera Following Interactions with FDA and EMA
« Protagonist Therapeutics (Nasdaq: PTGX) announced today that the Division of Nonmalignant Hematology at the U.S. Food and Drug Administration ("FDA") has provided important feedback during an End-of-Phase 2 meeting on rusfertide (PTG-300), an investigational new treatment for polycythemia vera ("PV
« Protagonist Therapeutics (Nasdaq: PTGX) announced today that the Division of Nonmalignant Hematology at the U.S. Food and Drug Administration ("FDA") has provided important feedback during an End-of-Phase 2 meeting on rusfertide (PTG-300), an investigational new treatment for polycythemia vera ("PV
Manouche
in
MPN Voice
3 years ago
Spike Antibody Test Results
I got the results of my Semi-Quantitative Covid Spike Antibody test (LabCorp). I DO NOT have CLL. I am a healthy 66 year old. I took the test 6 weeks after my second Pfizer shot. The result was >250. (Interpretation says <0.8 is negative, >0.79 is positive. I guess that means I am very positive.
I got the results of my Semi-Quantitative Covid Spike Antibody test (LabCorp). I DO NOT have CLL. I am a healthy 66 year old. I took the test 6 weeks after my second Pfizer shot. The result was >250. (Interpretation says <0.8 is negative, >0.79 is positive. I guess that means I am very positive.
Ibru
in
CLL Support
3 years ago
Platelets and Family History - Familial (Malignant) versus Hereditary (Benign) Thrombocytosis
Just thought I would post something interesting I learned in a recent discussion with my MPN specialist regarding the connection between families and platelets. Many of you are familiar with my situation. Age 30, platelets mildly elevated 430-455 for last 10 years. Driver mutation tests all negative.
Just thought I would post something interesting I learned in a recent discussion with my MPN specialist regarding the connection between families and platelets. Many of you are familiar with my situation. Age 30, platelets mildly elevated 430-455 for last 10 years. Driver mutation tests all negative.
cmc_ufl
in
MPN Voice
3 years ago
Worthwhile: an article, a presentation, and a table
The article focuses on NOTCH1 (and also -2 and -4 as these are involved in CLL) both mutated and activated forms as applicable. I refer to these collectively as NOTCH. The article includes among other things how NOTCH can point to limited effectiveness of ibrutinib (once you start treatment), on how
The article focuses on NOTCH1 (and also -2 and -4 as these are involved in CLL) both mutated and activated forms as applicable. I refer to these collectively as NOTCH. The article includes among other things how NOTCH can point to limited effectiveness of ibrutinib (once you start treatment), on how
Luap001
in
CLL Support
3 years ago
Lack of energy
Hi All I have MF with low hb 90 and platelets 30 at moment I am tired all the time. Age 79 and been treated since 2007 on Ruxolitinib 5mg twice a day and injections exprex and zarzio 3 times a week. I have transfusion occasionally. Is there anything you could recommend to boast my energy?
Hi All I have MF with low hb 90 and platelets 30 at moment I am tired all the time. Age 79 and been treated since 2007 on Ruxolitinib 5mg twice a day and injections exprex and zarzio 3 times a week. I have transfusion occasionally. Is there anything you could recommend to boast my energy?
WeeHarry
in
MPN Voice
3 years ago
CCL tests
Before treatment I received the following medical record : Please advice me, which test are belonging to : Flow Cytometry Test FISH Test IgVH Mutation Status Test Radiology report Thank you - my precious advisers , Chính Note : I'm sorry , my Medical record in Vietnamese added with English
Before treatment I received the following medical record : Please advice me, which test are belonging to : Flow Cytometry Test FISH Test IgVH Mutation Status Test Radiology report Thank you - my precious advisers , Chính Note : I'm sorry , my Medical record in Vietnamese added with English
Chinhdo
in
CLL Support
3 years ago
Wednesday 13th January 2021 Webinar- Survivorship and late effects of acute leukaemia
Date: Wednesday 13th January 2021 Time: 9:30am Guests: Dr Amit Patel, Consultant Haematologist, Cellular Therapies and Transplantation, The Christie NHS Foundation Trust Dr Steven Knapper, Clinical Senior Lecturer in Haematology and consultant haematologist, University Hospital of Wales. Kate Stallard
Date: Wednesday 13th January 2021 Time: 9:30am Guests: Dr Amit Patel, Consultant Haematologist, Cellular Therapies and Transplantation, The Christie NHS Foundation Trust Dr Steven Knapper, Clinical Senior Lecturer in Haematology and consultant haematologist, University Hospital of Wales. Kate Stallard
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
3 years ago
Italfarmaco Announces Publication of Positive Long-term Data for Givinostat in Polycythemia Vera Patients in Blood Cancer Journal
« — Four-year mean follow-up data demonstrate an overall response rate (ORR) of over 80% throughout the follow-up period — — Randomized, double-blind Phase 3 study to assess the efficacy and safety of GIVinostat versus hydroxyurea IN JAK2V617F-positive high-risk Polycythemia Vera patients (GIV-IN PV
« — Four-year mean follow-up data demonstrate an overall response rate (ORR) of over 80% throughout the follow-up period — — Randomized, double-blind Phase 3 study to assess the efficacy and safety of GIVinostat versus hydroxyurea IN JAK2V617F-positive high-risk Polycythemia Vera patients (GIV-IN PV
Manouche
in
MPN Voice
3 years ago
CLL with “normal” FISH
Hello so while I am diagnosed with CLL, my FISH was normal meaning any abnormalities were not present in amounts sufficient to be detected. And while my diagnosis is recent, I have probably had CLL for five years without knowing it because my lymphocyte count has been high enough all along. It’s only
Hello so while I am diagnosed with CLL, my FISH was normal meaning any abnormalities were not present in amounts sufficient to be detected. And while my diagnosis is recent, I have probably had CLL for five years without knowing it because my lymphocyte count has been high enough all along. It’s only
Luap001
in
CLL Support
3 years ago
post-vaccination antibody test
Hi have a question for people with CLL who have already had an RNA vaccine (Pfizer and Moderna) or other. have you done a serological test for antibodies in the laboratory? After what time did you do such a test? what was your result of this test? Greetings from Poland Thank you for your response
Hi have a question for people with CLL who have already had an RNA vaccine (Pfizer and Moderna) or other. have you done a serological test for antibodies in the laboratory? After what time did you do such a test? what was your result of this test? Greetings from Poland Thank you for your response
BART4
in
CLL Support
3 years ago
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