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Good News. Update on previous posts.
Having stopped HU on the instructions of A&E and my Haemo still insisting that breathing problems not caused by HU I requested GP to refer me to Dr Claire Harrison and yesterday I had a telephone appointment with her. What a lovely conversation. She acknowledged that HU was not agreeing with me obviously
Having stopped HU on the instructions of A&E and my Haemo still insisting that breathing problems not caused by HU I requested GP to refer me to Dr Claire Harrison and yesterday I had a telephone appointment with her. What a lovely conversation. She acknowledged that HU was not agreeing with me obviously
Heather270240
in
MPN Voice
3 years ago
New York City -- CLL Society Patient Support Group Sunday May 9 , 2021 3pm – 5pm
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us We will meet by Zoom on May 9 at 3:00pm Date:Sunday May 9 , 2021 (or choose another day & time
CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL Society Support & Education Network. Please join us We will meet by Zoom on May 9 at 3:00pm Date:Sunday May 9 , 2021 (or choose another day & time
lankisterguy
Volunteer
in
CLL Support
3 years ago
Clumping platelets?
Does anyone here know anything about possible clumping platelets? My platelets have been dropping steadily and are now at 49. I don't have any bruising or nosebleeds or anything and my haematology nurse has ordered a blood film with my next blood test to see if they are clumping and causing a falsely
Does anyone here know anything about possible clumping platelets? My platelets have been dropping steadily and are now at 49. I don't have any bruising or nosebleeds or anything and my haematology nurse has ordered a blood film with my next blood test to see if they are clumping and causing a falsely
Otterfield
in
MPN Voice
3 years ago
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Leukaemia Care and Lymphoma Action - CLL treatment update webinars – 26th April and 5th May 2021
It has been a good start to the year with several new CLL treatments being approved or approaching approval in UK countries. Leukaemia Care and Lymphoma Action are pleased to provide two joint CLL webinars to help with understanding the increasingly complex picture of CLL treatment and options for different
It has been a good start to the year with several new CLL treatments being approved or approaching approval in UK countries. Leukaemia Care and Lymphoma Action are pleased to provide two joint CLL webinars to help with understanding the increasingly complex picture of CLL treatment and options for different
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
COVID-19 Vaccinations & Testing Dr. Furman & LLS
url=https%3A%2F%2Fcllsociety.org%2F2021%2F04%2Fdr-rick-furman-discusses-covid-19-and-the-vaccines-in-chronic-
lymphocytic
-
leukemia
-cll-patients-live-at-the-new-york-city-cll-society-support-group-meeting%2F or the same presentation directly on YouTube: https://youtu.be/cBzWTw_a0BQ - Please read the LLS
url=https%3A%2F%2Fcllsociety.org%2F2021%2F04%2Fdr-rick-furman-discusses-covid-19-and-the-vaccines-in-chronic-
lymphocytic
-
leukemia
-cll-patients-live-at-the-new-york-city-cll-society-support-group-meeting%2F or the same presentation directly on YouTube: https://youtu.be/cBzWTw_a0BQ - Please read the LLS
lankisterguy
Volunteer
in
CLL Support
3 years ago
Living Well With CML - Webinar 4.30pm Wednesday 21st April.
Please join us for this free webinar , there are places available registration required https://t.co/eD9PqLbihg?amp=1 The aim of this webinar is to support chronic myeloid leukaemia (CML) patients to live well with their condition. The panel will explore challenges and opportunities that can impact on
Please join us for this free webinar , there are places available registration required https://t.co/eD9PqLbihg?amp=1 The aim of this webinar is to support chronic myeloid leukaemia (CML) patients to live well with their condition. The panel will explore challenges and opportunities that can impact on
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
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
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
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
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
Hello
Perhaps I should add I was also diagnosed with CLL (Chronic
Lymphocytic
Leukemia
) in March 2020 but thankfully under control at present. As a first post I was just going to introduce myself but turned out a bit longer than expected!!! Thank you for reading. Tigs
Perhaps I should add I was also diagnosed with CLL (Chronic
Lymphocytic
Leukemia
) in March 2020 but thankfully under control at present. As a first post I was just going to introduce myself but turned out a bit longer than expected!!! Thank you for reading. Tigs
Tiggycat1
in
Multiple System Atrophy Trust
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
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
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
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
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
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
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