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Living with Chronic Neuropathic Pain
It was only following a move interstate to QLD and finding the most remarkable doctor who explained that my high platelet count could lead to
Acute
Myeloid
Leukaemia
(AML) and I needed to have it looked at. So I conceded to a bone marrow biopsy.
It was only following a move interstate to QLD and finding the most remarkable doctor who explained that my high platelet count could lead to
Acute
Myeloid
Leukaemia
(AML) and I needed to have it looked at. So I conceded to a bone marrow biopsy.
Hidden
in
Pain Concern
4 years ago
Sheilding letter - I got one
Hi All I received this email see below - then forwarded it to my Dr surgery and they confirmed i should off had a letter and one arrived the next day. Covid-19 We are aware from feedback from patients that there is confusion over whether they should be shielding and what this means. In addition, many
Hi All I received this email see below - then forwarded it to my Dr surgery and they confirmed i should off had a letter and one arrived the next day. Covid-19 We are aware from feedback from patients that there is confusion over whether they should be shielding and what this means. In addition, many
TheFlyer
in
CLL Support
4 years ago
Covid-19: What, if anything, can we learn from integrative oncology experts?
I have just read a long article addressing possible concrete responses to Covid-19 by a doc specializing in integrative oncology. It was written for lay people (thank goodness!). Is there anyone in this group who sees an integrative oncologist for CLL? If there is, I would be interested in hearing
I have just read a long article addressing possible concrete responses to Covid-19 by a doc specializing in integrative oncology. It was written for lay people (thank goodness!). Is there anyone in this group who sees an integrative oncologist for CLL? If there is, I would be interested in hearing
hsouter
in
CLL Support
4 years ago
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Richter's transformation.
Hello everyone. Been a little out of the way this month. The news of Dave's death left me very emotionally ill. I got to know him and currently I still don't understand his sudden death. I want to update my health status. As you know with the coronavirus problem they have canceled all visits. My doctor
Hello everyone. Been a little out of the way this month. The news of Dave's death left me very emotionally ill. I got to know him and currently I still don't understand his sudden death. I want to update my health status. As you know with the coronavirus problem they have canceled all visits. My doctor
Priss69
in
CLL Support
4 years ago
UK CLL Forum *Follow-Up Survey for UK CLL Patients regarding the support you're getting- Please complete if you can.
The UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered with CLL Support (who moderate this site) and Leukaemia Care to promote a survey which will inform future planning . This is their message
The UK CLL Forum is the special interest group for medical doctors in UK with an interest and working in the clinical field of CLL management. They have partnered with CLL Support (who moderate this site) and Leukaemia Care to promote a survey which will inform future planning . This is their message
Jm954
Administrator
in
CLL Support
4 years ago
Jakafi for Patients with COVID-19
« Incyte announced that they are working in partnership with the FDA to initiate a phase III clinical trial to evaluate the efficacy and safety of ruxolitinib (Jakafi) plus standard-of-care (SoC), compared to SoC therapy alone, in patients with coronavirus disease 2019 (COVID-19) induced cytokine storm
« Incyte announced that they are working in partnership with the FDA to initiate a phase III clinical trial to evaluate the efficacy and safety of ruxolitinib (Jakafi) plus standard-of-care (SoC), compared to SoC therapy alone, in patients with coronavirus disease 2019 (COVID-19) induced cytokine storm
Manouche
in
MPN Voice
4 years ago
Essential thrombocytosis
I have been dx with essential thrombocytosis. I have went for a year with a high wbc of 12.44 (or higher) and platelets of 513 (or higher). I have had a bone biopsy and it came back no cancer. I also run a low grade fever of around 99.8 every day. My joints ache all the time. My oncologist said I'm
I have been dx with essential thrombocytosis. I have went for a year with a high wbc of 12.44 (or higher) and platelets of 513 (or higher). I have had a bone biopsy and it came back no cancer. I also run a low grade fever of around 99.8 every day. My joints ache all the time. My oncologist said I'm
Kimsteff
in
MPN Voice
4 years ago
Naked Scientist Podcast: COVID- 19 mutations - 25 min -
https://podcasts.apple.com/us/podcast/naked-genetics-from-the-naked-scientists/id527187069?i=1000471544600 From Naked Scientist series - the Naked Geneticist April15,2020. Several discussions w international scientist working w the virus using different approaches. (January 9,2020 is one of the dates
https://podcasts.apple.com/us/podcast/naked-genetics-from-the-naked-scientists/id527187069?i=1000471544600 From Naked Scientist series - the Naked Geneticist April15,2020. Several discussions w international scientist working w the virus using different approaches. (January 9,2020 is one of the dates
db601
in
CLL Support
4 years ago
CLL Medications and Corona Virus
I read a fascinating transcript of a moderated meeting between a Patient Power host and three very talented CLL Specialists. It had to do with the latest CLL Medications being considered at possible treatments for non CLL Corona Virus victims. In essence they were saying that the medical community is
I read a fascinating transcript of a moderated meeting between a Patient Power host and three very talented CLL Specialists. It had to do with the latest CLL Medications being considered at possible treatments for non CLL Corona Virus victims. In essence they were saying that the medical community is
wizzard166
in
CLL Support
4 years ago
Video Interview: Acute lymphoblastic leukaemia (ALL) research updates from ASH 2019. How genetic information aids diagnosis and treatment
Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on how genetic information about the
leukaemia
cell is used in the diagnosis and treatment of
acute
leukaemia
, along with what research was presented on the topic of genetics and
acute
Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on how genetic information about the
leukaemia
cell is used in the diagnosis and treatment of
acute
leukaemia
, along with what research was presented on the topic of genetics and
acute
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Marginal Zone Lymphoma (MZL) or Aggressive/Transformed CLL?
Hi everyone, What are the key markers for MZL? So far I have CD23-, CD43-, CD5-. Are these accurate, and what are other key markers, including genetic phenotype? Pathologists (both are highly respected institutions--CLL society approved) are conflicted about my dad's diagnosis--whether it is aggressive
Hi everyone, What are the key markers for MZL? So far I have CD23-, CD43-, CD5-. Are these accurate, and what are other key markers, including genetic phenotype? Pathologists (both are highly respected institutions--CLL society approved) are conflicted about my dad's diagnosis--whether it is aggressive
Phs2385
in
CLL Support
4 years ago
Sign up to our weekly newsletter and get all our advice and recommendations for self-isolation straight to your inbox
Stay informed about all our latest activities, events and news on our quest to support anyone affected by a blood cancer.
Sign up to our newsletter and keep up-to-date with what's happening at Leukaemia Care
https://www.leukaemiacare.org.uk/communication-preferences/ Read our regularly updated
Stay informed about all our latest activities, events and news on our quest to support anyone affected by a blood cancer.
Sign up to our newsletter and keep up-to-date with what's happening at Leukaemia Care
https://www.leukaemiacare.org.uk/communication-preferences/ Read our regularly updated
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Covid-19 help get food
A lot of people are posting about difficulty and worry over getting food / delivery slots ... I hope this helps... 1. Contact your local council Local U.K. councils are working to link people who can’t shop with volunteers who can shop for you. 2. Contact Local age concern branch as they are organising
A lot of people are posting about difficulty and worry over getting food / delivery slots ... I hope this helps... 1. Contact your local council Local U.K. councils are working to link people who can’t shop with volunteers who can shop for you. 2. Contact Local age concern branch as they are organising
Laax
in
MPN Voice
4 years ago
B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Phs2385
in
CLL Support
4 years ago
Covid Crisis and Volunteering.
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
dembonesDAMNBONES
in
Lung Conditions Community Forum
4 years ago
Transfusions
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
skipperL
in
MPN Voice
4 years ago
Confused
I have hypersensitivity pneumonitis with fibrosis and live alone, I haven't received a letter but am I a high risk person. I would like to know. I live on my own any way so I don't have baby contacts except possibly shopping.
I have hypersensitivity pneumonitis with fibrosis and live alone, I haven't received a letter but am I a high risk person. I would like to know. I live on my own any way so I don't have baby contacts except possibly shopping.
Almaz65
in
Lung Conditions Community Forum
4 years ago
MPN + Neurofibromatosis Type 1 (RASopathy)?
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and Neurofibromatosis Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions. A few factoids: the JAK2 mutation and the
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and Neurofibromatosis Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions. A few factoids: the JAK2 mutation and the
hunter5582
in
MPN Voice
4 years ago
Childhood ALL video update by Dr Sara Ghorashian from the 2019 American Society of Hematology (ASH)
In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood
acute
lymphoblastic
leukaemia
(ALL), and how these could be addressed. https://youtu.be/o4R9V5OeQoU
In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood
acute
lymphoblastic
leukaemia
(ALL), and how these could be addressed. https://youtu.be/o4R9V5OeQoU
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
ET Hydroxurea and Covid 19
Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg) for Essential Thrombocytosis (JAK2 mutation) makes you more susceptible to a virus like Covid19. All my other markers are fine eg white cells
Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg) for Essential Thrombocytosis (JAK2 mutation) makes you more susceptible to a virus like Covid19. All my other markers are fine eg white cells
Elzbietta
in
MPN Voice
4 years ago
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