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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
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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
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
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
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
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
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
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
UK Patients: Can you help with your opinion about treatment options. Have you received Ibrutinib + Venetoclax as your first treatment?
Can you help us to provide evidence of the patient experience of treatments in CLL and specifically, of this treatment for a UK NICE technology appraisal in the near future. CLL Support and working with Leukaemia Care and Lymphoma Action to support this treatment as an option for CLL patients. The first
Can you help us to provide evidence of the patient experience of treatments in CLL and specifically, of this treatment for a UK NICE technology appraisal in the near future. CLL Support and working with Leukaemia Care and Lymphoma Action to support this treatment as an option for CLL patients. The first
Jm954
Administrator
in
CLL Support
2 years ago
MPN Advocacy & Education international - Patient & Caregivers Conference April 15, 2022
For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD https://www.youtube.com/watch?v=5W9L104Xr6M Topic: New Approved MPN Drugs and Others, Ruben Mesa, MD https://www.youtube.com/watch?v=WdtM0CA-17A Topic: Demystifying
For those who could not attend, here are the links to the presentations. Topic: The 4 W's of Enrolling in a Clinical Trial, Laura Michaelis, MD https://www.youtube.com/watch?v=5W9L104Xr6M Topic: New Approved MPN Drugs and Others, Ruben Mesa, MD https://www.youtube.com/watch?v=WdtM0CA-17A Topic: Demystifying
hunter5582
in
MPN Voice
2 years ago
Canadian Access to COVID-19 Treatments for Persons Living with CLL
Each province and territory in Canada has its own set of rules and procedures to access treatments for COVID 19, both preventative treatments (Evusheld) and post exposure treatments (Paxlovid, Remdisivir, etc.) . CLL Canada has prepared a document which describes the treatments available and how to
Each province and territory in Canada has its own set of rules and procedures to access treatments for COVID 19, both preventative treatments (Evusheld) and post exposure treatments (Paxlovid, Remdisivir, etc.) . CLL Canada has prepared a document which describes the treatments available and how to
CLL_Canada_Group
in
CLL Support
2 years ago
Possible causes that could have triggered my CLL
I'm trying to figure out what was the cause for my CLL.
It's not a sort of
[i]why me? [/i]
Or
[i]what I did wrong?[/i]
It's just a kind of scientific exploration around the possible causes of this mysterious disease, a research of confirmation from you guys, who
I'm trying to figure out what was the cause for my CLL.
It's not a sort of
[i]why me? [/i]
Or
[i]what I did wrong?[/i]
It's just a kind of scientific exploration around the possible causes of this mysterious disease, a research of confirmation from you guys, who
Nikotati
in
CLL Support
2 years ago
MIN-102 update: summer 2022
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
wilburlois15
in
AMN EASIER
2 years ago
The battles we fight
The incurable disease CLL, silently creeps into our bodies, and gently starts launching an attack on the bone marrow. Wait and watch says the doctor, we can challenge it, with medications we can treat it. We wait until CLL has full control of the bone marrow and started presenting what the doctors call
The incurable disease CLL, silently creeps into our bodies, and gently starts launching an attack on the bone marrow. Wait and watch says the doctor, we can challenge it, with medications we can treat it. We wait until CLL has full control of the bone marrow and started presenting what the doctors call
AmCLL
in
CLL Support
2 years ago
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