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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
Register for a UK CLL treatment update webinar for patients as NICE publish latest Guidance.
Today NICE has released Final Guidance for acalabritinib access in England and Wales - Acalabrutinib for untreated and treated chronic lymphocytic
leukaemia
[ID1613] https://www.nice.org.uk/guidance/TA689 Starting a treatment is a big step to take in the CLL journey.
Today NICE has released Final Guidance for acalabritinib access in England and Wales - Acalabrutinib for untreated and treated chronic lymphocytic
leukaemia
[ID1613] https://www.nice.org.uk/guidance/TA689 Starting a treatment is a big step to take in the CLL journey.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
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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
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
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
WARWICK's ASCT Journey Begins Today...
Warwick is in very positive spirits, and two of his sons decided to show their support for their Dad (Warwick), by shaving their heads and doing some impressive fundraising for the
Leukaemia
Foundation, (naturally I've invited them to repeat those efforts for MATES too...)
Warwick is in very positive spirits, and two of his sons decided to show their support for their Dad (Warwick), by shaving their heads and doing some impressive fundraising for the
Leukaemia
Foundation, (naturally I've invited them to repeat those efforts for MATES too...)
socrates_8
in
MPN Voice
4 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
FBC Results Question
I have been suffering bone pain for a number of months which is a symptom of
leukaemia
( hence one of of concerns ) it suggests bone pain occurs due to crowding within the bone marrow of leukemic blood cells, which in turn forces immature cells into blood stream.
I have been suffering bone pain for a number of months which is a symptom of
leukaemia
( hence one of of concerns ) it suggests bone pain occurs due to crowding within the bone marrow of leukemic blood cells, which in turn forces immature cells into blood stream.
Redcollector
in
Leukaemia Support
4 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
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
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
Webinar - Living well with CLL - 3.30pm Monday 15th Feb
Once logged in head to
Leukaemia
Care's Facebook page at 3:30pm on 15th February and find the live video (it will be at the top of our feed). facebook.com/leukaemiacare Looking forward to seeing you there BW Nick
Once logged in head to
Leukaemia
Care's Facebook page at 3:30pm on 15th February and find the live video (it will be at the top of our feed). facebook.com/leukaemiacare Looking forward to seeing you there BW Nick
HAIRBEAR_UK
in
Leukaemia Support
4 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
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
4 years ago
CAR-NK and me
I came to MD Anderson to take part in the CAR-NK trial. I am a good candidate: in July my marrow involvement was 5%. Natural Killer cells don’t return to the marrow so CAR-NK doesn’t do much in the marrow. The lymphodepleting chemo given before the CAR-NK infusion might, however, clear the marrow a bit
I came to MD Anderson to take part in the CAR-NK trial. I am a good candidate: in July my marrow involvement was 5%. Natural Killer cells don’t return to the marrow so CAR-NK doesn’t do much in the marrow. The lymphodepleting chemo given before the CAR-NK infusion might, however, clear the marrow a bit
john-doe
in
CLL Support
3 years ago
Roche launches SARS-CoV-2 variant test to help monitor emerging coronavirus mutations.
Roche today announced the launch of the cobas® SARS-CoV-2 Variant Set 1 Test to detect and differentiate mutations found in variants that originated in the UK (B.1.1.7), South Africa (B.1.351), and Brazil (P.1). This research use only laboratory test can be used to help scientists track mutation prevalence
Roche today announced the launch of the cobas® SARS-CoV-2 Variant Set 1 Test to detect and differentiate mutations found in variants that originated in the UK (B.1.1.7), South Africa (B.1.351), and Brazil (P.1). This research use only laboratory test can be used to help scientists track mutation prevalence
2greys
in
Lung Conditions Community Forum
4 years ago
Moderna Announces First Participants Dosed in Phase 2/3 Study of COVID-19 Vaccine Candidate in Paediatric Population.
Moderna Inc. (Nasdaq: MRNA), a biotechnology company pioneering messenger RNA (mRNA) therapeutics and vaccines, today announced that the first participants have been dosed in the Phase 2/3 study, called the KidCOVE study, of mRNA-1273, the Company’s vaccine candidate against COVID-19, in children ages
Moderna Inc. (Nasdaq: MRNA), a biotechnology company pioneering messenger RNA (mRNA) therapeutics and vaccines, today announced that the first participants have been dosed in the Phase 2/3 study, called the KidCOVE study, of mRNA-1273, the Company’s vaccine candidate against COVID-19, in children ages
2greys
in
Lung Conditions Community Forum
4 years ago
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