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CAR-T post 9 months
Hi all Just the latest update on me - I’m still MRD negative 9 months after my CAR-T for aggressive CLL at the Peter Mac in Melbourne. Sadly the trial has now closed its CLL arm so only 9 of us in the world got this treatment for CLL. Here’s a more detailed update shared with the Leukaemia Foundation
Hi all Just the latest update on me - I’m still MRD negative 9 months after my CAR-T for aggressive CLL at the Peter Mac in Melbourne. Sadly the trial has now closed its CLL arm so only 9 of us in the world got this treatment for CLL. Here’s a more detailed update shared with the Leukaemia Foundation
Debinoz
in
CLL Support
3 years ago
CLL Transform to Lymphoma?
My ophthalmologist specialist is pretty sure I have ocular lymphoma. I will have a biopsy on August 25th. Does anyone have background on CLL combining with lymphoma?
My ophthalmologist specialist is pretty sure I have ocular lymphoma. I will have a biopsy on August 25th. Does anyone have background on CLL combining with lymphoma?
cll2013
in
CLL Support
3 years ago
How Good is the Level of Scientific Evidence Underlying the National Comprehensive Cancer Network Clinical Practice (NCCN) CLL Guidelines?
Our community support team take pride in maintaining reliable content in this community. When your life depends on it, you need confidence that what you are reading will give you the information you need. That way you can intelligently question your medical support team for reassurance that they are
Our community support team take pride in maintaining reliable content in this community. When your life depends on it, you need confidence that what you are reading will give you the information you need. That way you can intelligently question your medical support team for reassurance that they are
AussieNeil
Partner
in
CLL Support
3 years ago
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Lactase Dehydogenase level high!
I started seeing an MPN specialist on July 1. He tested for lactase dehydrogenase and in was 242. I just had it repeated and it is now 327. My platelets rose from 648 to 725, wbc went from 13 to 16. HCT went down a little bit from 48.3 to 47.5 which I think both are high for female. I am really bothered
I started seeing an MPN specialist on July 1. He tested for lactase dehydrogenase and in was 242. I just had it repeated and it is now 327. My platelets rose from 648 to 725, wbc went from 13 to 16. HCT went down a little bit from 48.3 to 47.5 which I think both are high for female. I am really bothered
Wewo01
in
MPN Voice
3 years ago
CLL Diet
My Oncologist told me diet has no effect on CLL. Does anyone have input as to a good diet while undergoing treatment now that it is soon to start for me? Even though we need Lipids, cutting back on them may help. Anybody heard that too? I gained too much weight during 2020 pandemic, and feel that will
My Oncologist told me diet has no effect on CLL. Does anyone have input as to a good diet while undergoing treatment now that it is soon to start for me? Even though we need Lipids, cutting back on them may help. Anybody heard that too? I gained too much weight during 2020 pandemic, and feel that will
Hugo51
in
CLL Support
3 years ago
Skin barnacles ??
CLL and Bladder cancer , past used Ibrutinib, Acalabrutinib and Gyzava … all worked in controlling CLL … BCG infusions for Bladder cancer working , I think…. I have developed what Dermatologist calls .. skin barnacles … she says it from past sun exposure… Anyone have this problem ?? I suspect it
CLL and Bladder cancer , past used Ibrutinib, Acalabrutinib and Gyzava … all worked in controlling CLL … BCG infusions for Bladder cancer working , I think…. I have developed what Dermatologist calls .. skin barnacles … she says it from past sun exposure… Anyone have this problem ?? I suspect it
fish61
in
CLL Support
3 years ago
Clarifying the problem of T-cell 'exhaustion'
Researchers in the Perelman School of Medicine at the University of Pennsylvania have illuminated an important limitation of the immune system in prolonged battles against cancers or viruses: T cells, which are among the most powerful weapons in the immune systems of humans and other vertebrates, remain
Researchers in the Perelman School of Medicine at the University of Pennsylvania have illuminated an important limitation of the immune system in prolonged battles against cancers or viruses: T cells, which are among the most powerful weapons in the immune systems of humans and other vertebrates, remain
2greys
in
Lung Conditions Community Forum
3 years ago
Share your story for our Spot Leukaemia campaign in September for Blood Cancer Awareness Month.
We’re looking for someone who was diagnosed with a chronic leukaemia at age 65+ who would like to share your story for our Spot Leukaemia campaign, raising awareness of the symptoms of leukaemia. If you wish to share your story with us for online, video, podcast or the press to help raise awareness.
We’re looking for someone who was diagnosed with a chronic leukaemia at age 65+ who would like to share your story for our Spot Leukaemia campaign, raising awareness of the symptoms of leukaemia. If you wish to share your story with us for online, video, podcast or the press to help raise awareness.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Myelofibrosis Treatment Option
Just saw this Webinar announced. Thought it might be of interest to some. Note that it is sponsored by a pharmaceutical company, so will likely focus on something they have in development. Welcome to this live expert webinar,
sponsored by Bristol-Myers Squibb.
Topics of discussion at this
Just saw this Webinar announced. Thought it might be of interest to some. Note that it is sponsored by a pharmaceutical company, so will likely focus on something they have in development. Welcome to this live expert webinar,
sponsored by Bristol-Myers Squibb.
Topics of discussion at this
hunter5582
in
MPN Voice
3 years ago
Pelabresib May Represent Optimal Partner for JAK Inhibition in Myelofibrosis
The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in patients with myelofibrosis are multifold, and the agent’s potential to improve disease biology and overcome shortcomings faced with JAK inhibitors make it a strong partner for combinations and a stand-out option vs other agents
The benefits yielded with the BET inhibitor pelabresib (formerly CPI-0610) in patients with myelofibrosis are multifold, and the agent’s potential to improve disease biology and overcome shortcomings faced with JAK inhibitors make it a strong partner for combinations and a stand-out option vs other agents
Manouche
in
MPN Voice
3 years ago
Targeted Therapies for Polycythemia Vera
« Andrew Kuykendall, MD: You bring up a great point there as far as the durability goes, because I have run into a few conversations with folks where there is a concern or some hesitancy to utilize ruxolitinib in the polycythemia vera setting due to concern of using their last gun. “Oh, if I utilize
« Andrew Kuykendall, MD: You bring up a great point there as far as the durability goes, because I have run into a few conversations with folks where there is a concern or some hesitancy to utilize ruxolitinib in the polycythemia vera setting due to concern of using their last gun. “Oh, if I utilize
Manouche
in
MPN Voice
3 years ago
CLL and Hyperbaric chamber
Hi Diagnosed in 2013 and on W&W but blood tests not so good and expecting to get some sort of treatment soon. Trying out using Hyperbaric Chamber, will do 20 sessions and then drop to 1 per week as advised so will be interesting to compare blood results before and after. Any body had similar experience
Hi Diagnosed in 2013 and on W&W but blood tests not so good and expecting to get some sort of treatment soon. Trying out using Hyperbaric Chamber, will do 20 sessions and then drop to 1 per week as advised so will be interesting to compare blood results before and after. Any body had similar experience
roblaw
in
CLL Support
3 years ago
Husband Update
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
It seems like so long since I’ve updated, but it’s been only a few months. Husband is doing… ok. We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month. It’s all become very, very real. The kids and I won’t be able
TM76
in
MPN Voice
3 years ago
Campaigns corner: To improve support and understanding of safety needs of blood cancer patients as lockdown lifts
To improve the experience of employed leukaemia patients as the COVID-19 pandemic restrictions lift.
[i]"We have launched the #LifeVsLivelihood campaign to highlight the ongoing challenges that clinically extremely vulnerable leukaemia patients face as restrictions ease and employers ask people
To improve the experience of employed leukaemia patients as the COVID-19 pandemic restrictions lift.
[i]"We have launched the #LifeVsLivelihood campaign to highlight the ongoing challenges that clinically extremely vulnerable leukaemia patients face as restrictions ease and employers ask people
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
The Lambda variant is now in 29 countries, but what evidence do we have that it’s more dangerous?
...........................................A variant of interest is one that has mutations that are predicted or known to affect things such as transmissibility (how easily the virus spreads), severity of disease, ability to evade immunity from past infections or vaccines, or confound diagnostic tests
...........................................A variant of interest is one that has mutations that are predicted or known to affect things such as transmissibility (how easily the virus spreads), severity of disease, ability to evade immunity from past infections or vaccines, or confound diagnostic tests
2greys
in
Lung Conditions Community Forum
3 years ago
Ruxolitinib and vaccine efficacy
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on Ruxolitinib? I am thoroughly confused and how safe I am now that I’ve been double vaccinated. Can our
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on Ruxolitinib? I am thoroughly confused and how safe I am now that I’ve been double vaccinated. Can our
Rob58
in
MPN Voice
3 years ago
Saxenda weight loss medication
I have myelofibrosis and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
I have myelofibrosis and take hydroxycarbamide. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
Ginny70
in
MPN Voice
3 years ago
A CLL Patient Story Sprinkled with Shakespeare!
A Patient Story Sprinkled with Shakespeare! Doreen Zetterlund, an actress, long-time CLL patient advocate, and member of a CLL Society Support Group, inspires us with her strategy to frontload her CLL knowledge to be certain that she will be well informed as to her best possible care, regardless of how
A Patient Story Sprinkled with Shakespeare! Doreen Zetterlund, an actress, long-time CLL patient advocate, and member of a CLL Society Support Group, inspires us with her strategy to frontload her CLL knowledge to be certain that she will be well informed as to her best possible care, regardless of how
bkoffman
CLL CURE Hero
in
CLL Support
3 years ago
Captivate Trial MRD status
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
I've been part of the CAPTIVATE trial since 2018. My treatment ended in May 2019....Ibrutinib for 12 months and Venetoclax for 9. I just received several test results including Flow Citometry and I am still MRD negative after 2 years. This trial was simply awesome and a life saver. I was originally
lamboman
in
CLL Support
3 years ago
Treatment and ocular lymphocytic leukemia
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
mickimauser11
in
CLL Support
3 years ago
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