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3.30pm Tues 5th July - webinar - What can help me when making decisions about joining clinical trials
The aim of this
Leukaemia
Care webinar is to help inform you of how clinical trials are run and elements you should consider when making decisions. The webinar and expert panel will seek to answer questions such as: Why are clinical trials important in medicine?
The aim of this
Leukaemia
Care webinar is to help inform you of how clinical trials are run and elements you should consider when making decisions. The webinar and expert panel will seek to answer questions such as: Why are clinical trials important in medicine?
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
Besremi and Phlebotomy
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Hello, I had my first PB last week since starting Besremi (January 2022). Besremi is doing great job on my WBC and PLT, but the HCT has climbed above my goal of 42. I waited two extra weeks hoping a higher dose at 110 might knock it down a bit, but no luck. At Hunter's suggestion, HEM approved 250
Elizka
in
MPN Voice
2 years ago
Richter's syndrome - Update- Lecture by pathologist Elias Campo
Hello everyone Yesterday I had the pleasure of attending a conference given by the pathologist PR Elias Campo at the Oncopole hospital in Toulouse. The topic was to talk about LLC and above all the main topic was the Richter Transformation. It was the first time that this transformation was discussed
Hello everyone Yesterday I had the pleasure of attending a conference given by the pathologist PR Elias Campo at the Oncopole hospital in Toulouse. The topic was to talk about LLC and above all the main topic was the Richter Transformation. It was the first time that this transformation was discussed
Priss69
in
CLL Support
2 years ago
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Leukaemia and stomach discomfort
Was diagnosed for
Leukaemia
in March 2021, WBCs suddenly increasing to 229 thousand in November. Taking Calquence 100mg. with mycophelonate 500, twice a day. Blood count markers seems to be under control presently, but for acidity and gas buildup, stomach discomfort getting worse by the day.
Was diagnosed for
Leukaemia
in March 2021, WBCs suddenly increasing to 229 thousand in November. Taking Calquence 100mg. with mycophelonate 500, twice a day. Blood count markers seems to be under control presently, but for acidity and gas buildup, stomach discomfort getting worse by the day.
GargR
in
CLL Support
2 years ago
Waiting for Pirtobrutinib
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
My husband has been on venetoclax for 3 years and a recent bone marrow biopsy shows cancer is growing and is up to 60%. His oncologist wants to put him on Pirtobrutinib, but it isn’t available yet. Does anyone know we can gain early access to this drug? He is 76 , diagnosed 13 years ago. He was
KLWC
in
CLL Support
2 years ago
Ruxolitinib
Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he has a lot of sores on head and face that will not clear and having problems with doctors not recognising that these sores and scabs can yet again
Husband has PV and MPN currently on Ruxolitinib which for him has been amazing and life saving. Only drawback is having had some skin cancers. Presently he has a lot of sores on head and face that will not clear and having problems with doctors not recognising that these sores and scabs can yet again
waddles22
in
MPN Voice
2 years ago
what provoked my CLL?
Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL. I see myself as the ideal candidate for this disease. In a study about 10 years ago, it was found that one of the little proven risk factors
Educating myself about CLL, I read that prolonged stimulation of the immune system in combination with genetic mutations and / or predisposition leads to CLL. I see myself as the ideal candidate for this disease. In a study about 10 years ago, it was found that one of the little proven risk factors
Yalokin
in
CLL Support
2 years ago
BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES
« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients in the control arm (p=0.005). Depletion of the JAK2V617F alle burden, which may lower the risk of progression to myelofibrosis, was observed
« No phlebotomies were required to maintain hematocrit <45% in the 6th year of treatment in 81.4% of patients receiving Besremi compared with 60.0% of patients in the control arm (p=0.005). Depletion of the JAK2V617F alle burden, which may lower the risk of progression to myelofibrosis, was observed
Manouche
in
MPN Voice
2 years ago
Questions about Jakafi
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Bluetoday1
in
MPN Voice
2 years ago
Hydroxyurea-induced ankle ulcers
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
veryoldman
in
MPN Voice
2 years ago
Cellular and humoral immune response to SARS-CoV-2 mRNA vaccines in patients treated with either Ibrutinib or Rituximab
In this study, we tested serological and cellular response to SARS-CoV-2 mRNA vaccines in 16 patients treated with Ibrutinib, 16 treated with maintenance Rituximab, 18 patients with chronic lymphocytic
leukaemia
(CLL) with watch and wait status and 21 healthy volunteers.
In this study, we tested serological and cellular response to SARS-CoV-2 mRNA vaccines in 16 patients treated with Ibrutinib, 16 treated with maintenance Rituximab, 18 patients with chronic lymphocytic
leukaemia
(CLL) with watch and wait status and 21 healthy volunteers.
gardening-girl
in
CLL Support
2 years ago
Anyone with Exon 12 mutation out there?
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
Hi Everyone, I was diagnosed a year and a half ago with polycythemia vera with a negative v617f mutation and a positive Exon 12 mutation. The literature says that about 95% of the p-vera cases are positive for v617f while 3% have one of many Exon 12 mutations. The disease presents itself a little
gvibes
in
MPN Voice
2 years ago
World Blood Cancer Day May 28th
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Dovme
in
MPN Voice
2 years ago
2022 NCCN Guidelines for MPNs
Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all. https://www.nccn.org
Another good resource posted by our friends from the MPN Research Foundation. 2022 National Comprehensive Cancer Network Guidelines - Myeloproliferative Neoplasms. Nice summary on a number of MPN topics written for patients. Great for someone new to MPNs, and a good review for all. https://www.nccn.org
hunter5582
in
MPN Voice
2 years ago
Acalabrutinib versus Covid19?
Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact on the covid 19 virus as a result of the Acalabrutinib? It will be greatly appreciated if CLL patients who are taking Acalabrutinib and contracted
Various reports suggest that CLL patients in clinical trials prescribed Acalabrutinib who contract covid 19 are surviving well due the anti inflammatory impact on the covid 19 virus as a result of the Acalabrutinib? It will be greatly appreciated if CLL patients who are taking Acalabrutinib and contracted
spanish36
in
CLL Support
2 years ago
Jakafi (Rux) vs Besremi Side Effects
Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief. I have PV Dx with ET features. I opted to go with
Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief. I have PV Dx with ET features. I opted to go with
EPguy
in
MPN Voice
2 years ago
Green tea
A 2020 database reviewTrusted Source of epidemiological and experimental studies in humans produced inconsistent results as well as limited evidence of the benefit of green tea consumption for lowering the risk of cancer. The researchers assessed 142 completed studies, including 1.1 million participants
A 2020 database reviewTrusted Source of epidemiological and experimental studies in humans produced inconsistent results as well as limited evidence of the benefit of green tea consumption for lowering the risk of cancer. The researchers assessed 142 completed studies, including 1.1 million participants
Mostew
in
MPN Voice
2 years ago
Introduction with questions - MPNs & Crispr Cas9 Gene editing
Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going
Hello everyone, I am new here. I am 27 Male and as of last week Jak2 positive. I have my bone marrow biopsy tomorrow to see whats what. My Platelets fluctuate between 550 & 600 and I have really no other symptoms other then the platelets, I wouldn't have known if not for random blood work. I am going
Hello94
in
MPN Voice
2 years ago
Hello, new diagnosed Cll and have questions
I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard. I'm not clear on "living a long time" but the oncologist isn't doing anything... but on the same tone, makes this sound like a 5 year death sentence. What about Richter syndrome
I am 50. B cell. Swollen lympnodes in stomach area. 15.5 cm swollen spleen. Non Hodgkins. Indolent? I think I heard. I'm not clear on "living a long time" but the oncologist isn't doing anything... but on the same tone, makes this sound like a 5 year death sentence. What about Richter syndrome
Diagnosedat50
in
CLL Support
2 years ago
What genetic / genomic information does a BMB give that bloods don’t?
Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard time getting accurate information about my mutation status. The last two BMBs were poor samples - short or crushed cores. Only found out when
Hi. I’ve been dipping getting in and out of this friendly and helpful group since I discovered it I have PMF, diagnosed 5 years ago and am having a hard time getting accurate information about my mutation status. The last two BMBs were poor samples - short or crushed cores. Only found out when
Rachelthepotter
in
MPN Voice
2 years ago
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