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Long time DX,SORT TIME TMT
I was diagnosed with CLL in 1995. I’ve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. I’ve positive movement with my numbers and the splenomegaly. My nodes were minimally involved. My side effects have been undetectable. Given good response
I was diagnosed with CLL in 1995. I’ve been on W&W until this year in Sept. at age 86. Treatment was initiated Ibrutinib 140mg, orally per diem. I’ve positive movement with my numbers and the splenomegaly. My nodes were minimally involved. My side effects have been undetectable. Given good response
desti
in
CLL Support
5 years ago
Dr Michael Keating's Story - Taking CLL Therapies From Bedside to Community
A fascinating overview of one of the giants in CLL research, who provided many of us with the first treatment capable of prolonging life expectancy (FCR) and for about 60% of those who are mutated IgHV, effectively a cure. From humble beginnings in Melbourne Australia, to a fulfilling career at the
A fascinating overview of one of the giants in CLL research, who provided many of us with the first treatment capable of prolonging life expectancy (FCR) and for about 60% of those who are mutated IgHV, effectively a cure. From humble beginnings in Melbourne Australia, to a fulfilling career at the
AussieNeil
Partner
in
CLL Support
5 years ago
IVGH results
Hello. I am new to the group, just diagnosed this month. My last CBC showed absolute lymphocytes at 5280. I was feeling pretty good after my doctor explained what CLL is, how it progresses etc. But today I got results of another test back with the following: IVGH Borderline Mutated Mutation Rate 3.0
Hello. I am new to the group, just diagnosed this month. My last CBC showed absolute lymphocytes at 5280. I was feeling pretty good after my doctor explained what CLL is, how it progresses etc. But today I got results of another test back with the following: IVGH Borderline Mutated Mutation Rate 3.0
lmav
in
CLL Support
5 years ago
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Clinical Utility of Chromosomal Microarray in Richter's Transformation
Chromosomal microarray (CMA) is clever, very sensitive technology which looks for extra (duplicated) or missing (deleted) chromosomal segments, sometimes called copy number variants (CNVs) - see illustration. These include: microdeletions and microduplications of chromosome segments, which are too
Chromosomal microarray (CMA) is clever, very sensitive technology which looks for extra (duplicated) or missing (deleted) chromosomal segments, sometimes called copy number variants (CNVs) - see illustration. These include: microdeletions and microduplications of chromosome segments, which are too
Jm954
Administrator
in
CLL Support
5 years ago
CALQUENCE gets FDA approval for treating CLL
The latest approval for Calquence (acalabrutinib), a Bruton tyrosine kinase (BTK) inhibitor, was granted under the FDA’s Real-Time Oncology Review and newly established Project Orbis programs. Calquence binds covalently to BTK, thereby inhibiting its activity. In B-cells, BTK signaling results in activation
The latest approval for Calquence (acalabrutinib), a Bruton tyrosine kinase (BTK) inhibitor, was granted under the FDA’s Real-Time Oncology Review and newly established Project Orbis programs. Calquence binds covalently to BTK, thereby inhibiting its activity. In B-cells, BTK signaling results in activation
Myrddin
in
CLL Support
5 years ago
Inulin - may help sleep and constipation
My daughter recently bought me some inulin to try as she had heard it can help you sleep. I can't honestly say it helped me sleep at the time, but a side effect is that it is helpful with bowel movements!! More recently I took some on holiday with me - for my bowels, and this time I do think it helped
My daughter recently bought me some inulin to try as she had heard it can help you sleep. I can't honestly say it helped me sleep at the time, but a side effect is that it is helpful with bowel movements!! More recently I took some on holiday with me - for my bowels, and this time I do think it helped
Ruby1
in
Thyroid UK
5 years ago
CKD
I've recently been diagnosed with Chronic Kidney Disease, mainly due to my high blood pressure which has now stabilised due to medication. Does anyone else have experience of CKD ?
I've recently been diagnosed with Chronic Kidney Disease, mainly due to my high blood pressure which has now stabilised due to medication. Does anyone else have experience of CKD ?
Atomheart
in
LUPUS UK
5 years ago
Cancer Fatigue and Getting Through the Holidays
The Leukemia & Lymphoma Society is offering a Free Telephone Support Program for Patients Families and Caregivers. - Click this link to register: https://pburkhard.wufoo.com/forms/qrfew60160p1a4/ or http://bit.ly/DecLnL. Cancer Fatigue and Getting Through the Holidays When: Wednesday
The Leukemia & Lymphoma Society is offering a Free Telephone Support Program for Patients Families and Caregivers. - Click this link to register: https://pburkhard.wufoo.com/forms/qrfew60160p1a4/ or http://bit.ly/DecLnL. Cancer Fatigue and Getting Through the Holidays When: Wednesday
lankisterguy
Volunteer
in
CLL Support
5 years ago
I would like to hear from people needing regular blood transfusions
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Following from my recent post - "Fludarabine: rare side effect of destroying ability for red blood cell production in myself".. I am now going to need transfusions of packed red cells probably monthly. This started 5 months ago. I've been having 4 units (that is approx 1 litre total) (I'm in Australia
Jotame
in
CLL Support
5 years ago
Fludarabine: rare side effect of destroying ability for red blood cell production in myself. But also unwell with fevers.
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
I've had a really difficult result from my bone marrow biopsy today. Four months ago I posted the effect of human Parvovirus on myself - in an immune-compromised person this virus can have the effect of inhibiting production of blood cells in bone marrow. Regular packed red cell transfusions have
Jotame
in
CLL Support
5 years ago
WILLIE NELSON QUIT SMOKING MARIJUANA
If anyone read any of the posts regarding long lived people with emphysema. Willie Nelson was diagnosed at age 44, according to several media outlets and his interviews. He will be 87 in April, 2020, making him 86, today. He started smoking at age 9. He states he is quiting smoking marijuana to help
If anyone read any of the posts regarding long lived people with emphysema. Willie Nelson was diagnosed at age 44, according to several media outlets and his interviews. He will be 87 in April, 2020, making him 86, today. He started smoking at age 9. He states he is quiting smoking marijuana to help
megshafer
in
Lung Conditions Community Forum
5 years ago
Caffeine reduction
I have supposedly got COPD and use a Fostair Nexthaler but since cutting right down on caffeine my breathing has massively improved. Also the pressure that my APAP runs at is 3-4 cm lower as well Why has reducing caffeine had such a great effect
I have supposedly got COPD and use a Fostair Nexthaler but since cutting right down on caffeine my breathing has massively improved. Also the pressure that my APAP runs at is 3-4 cm lower as well Why has reducing caffeine had such a great effect
Hidden
in
Lung Conditions Community Forum
5 years ago
CLL Specialist
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
After 4 years treatments. Going from Ofatumumba to imbruvica overnight. With no testing other than CBC ,and whatever goes with it. CT scans every 4 months. Do we need a CLL Specialist? Hubby had imbruvica for short time. Retuxium before that. Is on Itrocanizol for Histoplasmosis of the brain. Therefore
Hidden
in
CLL Support
5 years ago
Leukaemia Care Updated Patient Information - Richter's Syndrome in Chronic Lymphocytic Leukaemia
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Leukaemia Care is a UK charity so the support information is UK based. However the information about Richter's is useful, up to date and well laid out. https://media.leukaemiacare.org.uk/wp-content/uploads/Richter-Syndrome-in-Chronic-Lymphocytic-Leukaemia-CLL-Web-Version.pdf Jackie
UPDATE:
Jm954
Administrator
in
CLL Support
5 years ago
CLL Transformation - Richter's?
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
I'm not really new, but think this is my first post. I've been one of those lucky CLL people who has lived with this disease for 18 years with minimal issues and a long W&W, although i'm a 17p mutated. 4 years ago things had progressed to the point where i needed treatment and now i'm on Venetoclax
SarasotaPaul
in
CLL Support
5 years ago
iWCLL Guidelines for the diagnosis, management and treatment of CLL - a brief history and the changes in last year's long awaited update
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
I quite often refer to the above guidelines when questions arise about treatment, but it is well worth becoming acquainted with the whole document, because it encapsulates international expertise in the best practices for diagnosing and looking after those with CLL. If your specialist recommends something
AussieNeil
Partner
in
CLL Support
5 years ago
Dietary Restrictions to Prolong the Life of a Kidney Transplant
It has been found that if patients substitute soya or some vegetable source for the animal proteins they normally eat and severely restrict the amount of salt they normally consume they can significantly slow the decline of renal transplants. From personal experience I can say that such a diet really
It has been found that if patients substitute soya or some vegetable source for the animal proteins they normally eat and severely restrict the amount of salt they normally consume they can significantly slow the decline of renal transplants. From personal experience I can say that such a diet really
Falkenhayn
in
Kidney Transplant Patient Support
5 years ago
Why did I get CLL? Clearing up confusion between correlation and causation
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
Following our CLL diagnosis, one of our first questions is why me? What did I do, or not do, that caused me to get CLL? Many of us have shared what we think caused us to develop CLL/SLL, but in reality, unlike some other blood cancers, there is little firm evidence of exposure of any specific carcinogens
AussieNeil
Partner
in
CLL Support
5 years ago
My exposure to Ethylene Oxide.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
I have been exposed to Ethylene Oxide,a gas Used in the sterilization of medical devices. Diagnosed with CLL in 2016. My exposure was over a 4 year period ending in 1982. Could my CLL have been dormant in me that long? A!so have ME and Vasculitus.
Bogi1
in
CLL Support
5 years ago
DIL vs SLE - Anti Histone Antibody
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
katidid
in
LUPUS UK
5 years ago
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