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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
No fear and so grateful for Mutation diagnoses
So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain before). I now have Myelofibrosis and to be honest am over the moon!! Instead of it being a negative it’s like I have a life worth living again.
So for the past eight years since starting treatment for ET I was in chronic all over skeletal pain also neurological (all from medication as I had NO pain before). I now have Myelofibrosis and to be honest am over the moon!! Instead of it being a negative it’s like I have a life worth living again.
StreetPastor
in
MPN Voice
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
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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
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
BLOODWISE Meet Scientist 25 Nov 14:15-17:15 GMT
Finally you'll hear from Mel Plumridge, a Bloodwise ambassador, who will tell us about his experiences of chronic lymphocytic
leukaemia
(CLL).
Finally you'll hear from Mel Plumridge, a Bloodwise ambassador, who will tell us about his experiences of chronic lymphocytic
leukaemia
(CLL).
Myrddin
in
CLL Support
5 years ago
Researchers examine the metabolic effects of an oral blood cancer drug ~ RUXOLITINIB (Jakafi)
Post by MPN-MATE Admin » Wed Nov 13, 2019 11:14 am NOV. 12, 2019
Researchers examine the metabolic effects of an oral blood cancer drug...
by The Mount Sinai Hospital Hi guys... This report from the Mount Sinai Hospital is yet to be properly validated. However, many of us may have already read
Post by MPN-MATE Admin » Wed Nov 13, 2019 11:14 am NOV. 12, 2019
Researchers examine the metabolic effects of an oral blood cancer drug...
by The Mount Sinai Hospital Hi guys... This report from the Mount Sinai Hospital is yet to be properly validated. However, many of us may have already read
socrates_8
in
MPN Voice
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
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
Blood cancers: New generation stem cell transplant significantly reduces complications for patients
Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More great good news is coming our way... This article has already successfully run 'Human Trials', and in the USA, it's about to be accepted by the FDA for a Phase III Clinical Trial... Impressive results as you will see from reading
Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More great good news is coming our way... This article has already successfully run 'Human Trials', and in the USA, it's about to be accepted by the FDA for a Phase III Clinical Trial... Impressive results as you will see from reading
socrates_8
in
MPN Voice
5 years ago
A conundrum for use v. non-use of specific amino acids in muscle atrophy and immune support for CLL patients
CLL and cancer patients, particularly those over 70, are often concerned about muscle wasting or muscle atrophy. Sarcopenia is characterized as the progressive loss of muscle mass that is typically associated with aging. These patients are frequently advised to increase their intake of dietary proteins
CLL and cancer patients, particularly those over 70, are often concerned about muscle wasting or muscle atrophy. Sarcopenia is characterized as the progressive loss of muscle mass that is typically associated with aging. These patients are frequently advised to increase their intake of dietary proteins
Higsby
in
CLL Support
5 years ago
Extensive body heat.
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?
Boriqua
in
MPN Voice
5 years ago
Take both Nplate and Rituximab at the same time
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
farasad2001
in
ITP Support Association
5 years ago
Don’t ever give up hope of getting answers to why your so ill, it just needs to be dealt with by the right person.
Finally saw a Dr who listened to me and put me in the right direction and I was offered an Referal with an immunologist after much I’ll health and many symptoms. Why wasn’t it picked up on sooner and why does it take so long, no wonder people give up all hope of ever being believed and treated. Was very
Finally saw a Dr who listened to me and put me in the right direction and I was offered an Referal with an immunologist after much I’ll health and many symptoms. Why wasn’t it picked up on sooner and why does it take so long, no wonder people give up all hope of ever being believed and treated. Was very
Hidden
in
LUPUS UK
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
Not what it turned out to be
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with
mdcupp6201
in
MPN Voice
5 years ago
Polycythemia Vera with myelofibrosis
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?
IK5555
in
MPN Voice
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
Are they faking this serious illness?
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up
Justwantanswers
in
Leukaemia Support
5 years ago
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