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An Introduction
Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6 months. He has given me brief overview of how CLL progresses and the chemical treatments available, none of which I'm currently on as I have some ways
Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6 months. He has given me brief overview of how CLL progresses and the chemical treatments available, none of which I'm currently on as I have some ways
NWcllfighter
in
CLL Support
6 years ago
Coping with fatigue dates
Leukaemia
Care are running a series of days to help with coping with fatigue. The next one is in Cardiff on 15th September and then there is one in Sheffield and another in Edinburgh. There will be talks from a fatigue expert, Dr Anne Johnson and the agenda looks really interesting.
Leukaemia
Care are running a series of days to help with coping with fatigue. The next one is in Cardiff on 15th September and then there is one in Sheffield and another in Edinburgh. There will be talks from a fatigue expert, Dr Anne Johnson and the agenda looks really interesting.
Pauline43
in
MPN Voice
6 years ago
The Changing Landscape of Lymphoma - National Conference - VANCOUVER, BC - Saturday, September 15, 2018
The Changing Landscape of Lymphoma National Conference - VANCOUVER, BC https://mailchi.mp/lymphoma/sance-dducation-sur-le-lymphome-ville-de-qubec-2555481?e=7b399e8498 Lymphoma Canada invites you to attend the second annual national conference on lymphoma featuring specialists from across Canada.
The Changing Landscape of Lymphoma National Conference - VANCOUVER, BC https://mailchi.mp/lymphoma/sance-dducation-sur-le-lymphome-ville-de-qubec-2555481?e=7b399e8498 Lymphoma Canada invites you to attend the second annual national conference on lymphoma featuring specialists from across Canada.
lankisterguy
Volunteer
in
CLL Support
6 years ago
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CSR - CLL
Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind the macula causing sight distortion. There is medical research suggesting that leukemic infiltration is a possibility, albeit a rare one. Have any
Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind the macula causing sight distortion. There is medical research suggesting that leukemic infiltration is a possibility, albeit a rare one. Have any
Lapo
in
CLL Support
6 years ago
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Road to BMT...oops just got there (Day +250)
Hello HealthUnlocked Community, I wanted to reach out to everyone and give you an update on Mark’s progress with his BMT, today is Day +250 – can I get a YAHOO!!! We just got back from our clinic appointment down at PMH in Toronto and once again we are thrilled to advise that blood counts are normal
Hello HealthUnlocked Community, I wanted to reach out to everyone and give you an update on Mark’s progress with his BMT, today is Day +250 – can I get a YAHOO!!! We just got back from our clinic appointment down at PMH in Toronto and once again we are thrilled to advise that blood counts are normal
NMMP
in
CLL Support
6 years ago
Ibrutinib response from NHSE to Vernon Coaker MP
Therefore, since January 2017, NHS England has routinely commissioned ibrutinib for relapsed / refractory chronic lymphocytic
leukaemia
and chronic lymphocytic
leukaemia
with 17p deletion or TP53 mutation. Prior to this, ibrutinib was funded via the Cancer Drugs Fund.
Therefore, since January 2017, NHS England has routinely commissioned ibrutinib for relapsed / refractory chronic lymphocytic
leukaemia
and chronic lymphocytic
leukaemia
with 17p deletion or TP53 mutation. Prior to this, ibrutinib was funded via the Cancer Drugs Fund.
Mick491
in
CLL Support
6 years ago
Needing prayers - heading to emergency room with 101.6 neutropenic fever
Cll specialist called and told me to urgently go to hospital for Antibiotics in case of bacteria infection .... this is my first fever w cll and neutropenia- said I will be there are least 72 hrs 👎. There goes my beach vacation:( ugh so annoying this cancer !!!!!!
Cll specialist called and told me to urgently go to hospital for Antibiotics in case of bacteria infection .... this is my first fever w cll and neutropenia- said I will be there are least 72 hrs 👎. There goes my beach vacation:( ugh so annoying this cancer !!!!!!
Luckyliss
in
CLL Support
6 years ago
Some ideas please
Hello again, I have transferred to the Marsden, I was told at my local hospital of my CLL I have received “copying of letters” but flummoxed 😶 don’t understand what a immunoglobulin gene mutation status is? Also immunophenotyping? Tried looking it up, but not sure familiar with this. Also the doctor
Hello again, I have transferred to the Marsden, I was told at my local hospital of my CLL I have received “copying of letters” but flummoxed 😶 don’t understand what a immunoglobulin gene mutation status is? Also immunophenotyping? Tried looking it up, but not sure familiar with this. Also the doctor
Annieareyouok
in
CLL Support
6 years ago
Leukaemia
I only want that all people here suffering from illness could live plenty life on his happinness until the day he wants us to go. We need to be prepared in life for all the darkness too.
I only want that all people here suffering from illness could live plenty life on his happinness until the day he wants us to go. We need to be prepared in life for all the darkness too.
Worldcup691
in
CLL Support
6 years ago
IVF with donor eggs, previous stem cell transplant and early menopause
Hi ladies Im not sure if you will be able to give any advice but 14 years ago i had
leukaemia
and my treatment involved chemo and total body radiation for stem cell transplant. My periods stopped straight away and i went into early menopause at 20!
Hi ladies Im not sure if you will be able to give any advice but 14 years ago i had
leukaemia
and my treatment involved chemo and total body radiation for stem cell transplant. My periods stopped straight away and i went into early menopause at 20!
Caitlyn84
in
Fertility Network UK
6 years ago
Putting Your Team together- How many Specialists do you need and what to do if it's not possible to see Even One
I have talked and written extensively on the importance of having a CLL specialist on your team. We have even set up for, sadly only for USA patients at this time, free online consults with CLL specialists through our Expert Access program. We believe strongly in it. But not everyone has such expert
I have talked and written extensively on the importance of having a CLL specialist on your team. We have even set up for, sadly only for USA patients at this time, free online consults with CLL specialists through our Expert Access program. We believe strongly in it. But not everyone has such expert
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
NEWS - Scottish Medicines Consortium (SMC) recommend the use of midostaurin for adult acute leukaemia
It is then used alone (monotherapy) for 12 months, aiming to prevent the
leukaemia
from returning. This is known as maintenance therapy.
It is then used alone (monotherapy) for 12 months, aiming to prevent the
leukaemia
from returning. This is known as maintenance therapy.
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
CLLSA and Leukaemia Care Joint Response to NHS England regarding Ibrutinib Prescribing as per NICE TA
CLLSA and
Leukaemia
Care firmly support and endorse the review replies, positions and current combined evidence provided by the CLL Forum (the UK CLL clinical expert group) and Janssen (the manufacturer).
CLLSA and
Leukaemia
Care firmly support and endorse the review replies, positions and current combined evidence provided by the CLL Forum (the UK CLL clinical expert group) and Janssen (the manufacturer).
Jm954
Administrator
in
CLL Support
6 years ago
Breakthrough therapy saves Mike's life - reports of innovative precision medicines for cancers from ASCO in Daily Mail
One man to have already benefited from the advances in precision medicine is
leukaemia
sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016.
One man to have already benefited from the advances in precision medicine is
leukaemia
sufferer Mike Brandon. The 34-year-old from Bristol was desperately ill when he underwent pioneering CAR T therapy in the US city of Philadelphia in 2016.
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Acute Lymphoblastic Leukaemia – a wife’s perspective
Read full story here https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/acute-lymphoblastic-
leukaemia
-a-wifes-perspective/
Read full story here https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/acute-lymphoblastic-
leukaemia
-a-wifes-perspective/
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Cirmtuzumab
Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1). Because ROR1 is found nearly exclusively on cancer cells, an antibody against it may be the holy grail of antibodies, one that hits only the cancer
Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1). Because ROR1 is found nearly exclusively on cancer cells, an antibody against it may be the holy grail of antibodies, one that hits only the cancer
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Help and thoughts confused
So perhaps a way forward for now he does think the stresses of my life are impacting upon my immune system ... stress in my life has been extreme husband committed suicide 4 years ago and my son was diagnosed with
leukaemia
in 2016 ongoing I am ok about these considerations ,,,will think about using
So perhaps a way forward for now he does think the stresses of my life are impacting upon my immune system ... stress in my life has been extreme husband committed suicide 4 years ago and my son was diagnosed with
leukaemia
in 2016 ongoing I am ok about these considerations ,,,will think about using
Christie22
in
LUpus Patients Understanding and Support
6 years ago
My mom 78 years old diagnosed with CLL.
Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she already had 2010 upon checkihg my folder files of her blood test. Doctor prescribe CHLORAMBUCIL, yo be taken 2 tabs a day... would you advise to proceed with oral chemotheraphy? Or just let her take the herbal meficibe...? Pls
Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she already had 2010 upon checkihg my folder files of her blood test. Doctor prescribe CHLORAMBUCIL, yo be taken 2 tabs a day... would you advise to proceed with oral chemotheraphy? Or just let her take the herbal meficibe...? Pls
vilmacheng
in
CLL Support
6 years ago
Good news 4 months post CAR-T therapy
Hi I got good news today 4 months post CAR-T when I saw Dr. Kipps. Hgb is over 14 so back to normal. That means the iron that I am taking is working and that my bone marrow is healthy. My ALC (absolute lymphocyte count) was 1.0, and that means are likely no B cells in my peripheral blood which is good
Hi I got good news today 4 months post CAR-T when I saw Dr. Kipps. Hgb is over 14 so back to normal. That means the iron that I am taking is working and that my bone marrow is healthy. My ALC (absolute lymphocyte count) was 1.0, and that means are likely no B cells in my peripheral blood which is good
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
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