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A brief update post Venetoclax+Rituximab - treatment number 4
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Jm954
Administrator
in
CLL Support
2 years ago
See a Dermatologist On a Regular Basis, if possible.
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Vizilo
in
CLL Support
2 years ago
Doctor cannot fully diagnose without bone marrow biopsy and PET scan?
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
Update Results: Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results: An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction
SunCalifornia
in
CLL Support
2 years ago
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Evosheld
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
I joined the Evosheld UK Facebook page where there is a strong campaign for the government to authorise Evusheld. We were asked to write to our MPs and ask for the question to raised on the House of Commons. I have written several letters to my MP and generally get a stock reply. Here is the latest
kitchengardener2
in
CLL Support
2 years ago
CLL highly correlated to other cancers?
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
My husband has MBL - I understand this as stage 0 CLL. He is asymptomatic and well. His iron/ ferritin suddenly dropped and a small bowel malignant tumour was diagnosed and successfully removed. The Haematologist who manages the CLL commented that it’s unsurprising that he developed a secondary cancer
NixRose
in
CLL Support
2 years ago
Relapse Worries? Help, Please!
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
Hi everyone, I started treatment (V + O) in January 2020; a year later, I was done, and had a flow blood result of "no detectable abnormalities" or whatever. Yay! Today, however, I got the results of another flow blood test, 20 months after treatment ended, and it says "the immunophenotype of these
DRM18
in
CLL Support
2 years ago
Monoclonal antibodies vs. Paxlovid
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
I recently recovered from Covid-19 after taking Paxlovid. I was diagnosed with CLL in 2009 and began treatment with Ibrutinib in early December 2020. I also received the full recommended doses of Evusheld since antibody tests showed I had an inadequate response to the vaccine. My case of Covid was
AVD92449
in
CLL Support
2 years ago
New Diagnosis :what does all this blood work mean?
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
I was recently diagnosed with CLL. My hematologist/oncologist ran the standard tests and this is some of the info I see: No Jak2 17 mutation detected, No 9 mutation detected, No 12 mutation detected, No 10 mutation detected, No 14/17 Mutation detected A negative FISH for BCR-ABLI fusion. 2 weeks
Adante
in
CLL Support
2 years ago
World CLL Day / Blood Cancer Awareness Month
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
CLL Support is marking Blood Cancer Awareness Month in September with an initiative that underpins our “You Can Live Well with CLL” message. This is not simply a convenient phrase that rhymes but seeks to demonstrate and empower our members to endeavour to make the best of their diagnosis, treatment
Mild-Rover
in
CLL Support
2 years ago
Optical Genome Mapping: a promising new tool to assess genomic complexity - Part Two
Further to https://healthunlocked.com/cllsupport/posts/148409355/optical-genome-mapping-a-promising-new-tool-to-assess-genomic-complexity-in-cll [u]An update from watching the OGM webinar[/u] My impression is that AML cells' DNA has greater structural variation (mutation) than seen in CLL. Some of
Further to https://healthunlocked.com/cllsupport/posts/148409355/optical-genome-mapping-a-promising-new-tool-to-assess-genomic-complexity-in-cll [u]An update from watching the OGM webinar[/u] My impression is that AML cells' DNA has greater structural variation (mutation) than seen in CLL. Some of
bennevisplace
in
CLL Support
2 years ago
Your Role in Managing Your Care
Thriving with CLL: Your Role in Managing Your Care
Free Webinar Presented by the Patient Empowerment Network Tuesday, August 30th 1:00 pm - 1:30 pm ET - https://powerfulpatients.org/event/thriving-with-cll-your-role-in-managing-your-care/ - How can patients thrive with chronic lymphocytic
Thriving with CLL: Your Role in Managing Your Care
Free Webinar Presented by the Patient Empowerment Network Tuesday, August 30th 1:00 pm - 1:30 pm ET - https://powerfulpatients.org/event/thriving-with-cll-your-role-in-managing-your-care/ - How can patients thrive with chronic lymphocytic
lankisterguy
Volunteer
in
CLL Support
2 years ago
Restoration of the immune function as a complementary strategy to treat Chronic Lymphocytic Leukemia effectively
This publication is very interesting and describes the latest approaches to the treatment of CLL, relating them to the action of the immune system. There are a number of new insights into the mechanism of CLL such as: "CLL has undergone relevant clinical advances in the past decades, both in the understanding
This publication is very interesting and describes the latest approaches to the treatment of CLL, relating them to the action of the immune system. There are a number of new insights into the mechanism of CLL such as: "CLL has undergone relevant clinical advances in the past decades, both in the understanding
Yalokin
in
CLL Support
2 years ago
Elevated PSA due to Tagrisso?
Hi all: My 79 y.o father has been on Tagrisso for nearly a year now. He just had his PSA levels tested and there's a bit of an increase. I'm wondering if anyone out there has had the same experience? (He does have a history of BPH and experienced urinary urgency soon after starting on Tagrisso.)
Hi all: My 79 y.o father has been on Tagrisso for nearly a year now. He just had his PSA levels tested and there's a bit of an increase. I'm wondering if anyone out there has had the same experience? (He does have a history of BPH and experienced urinary urgency soon after starting on Tagrisso.)
hopejunkie
in
Lung Cancer Support
2 years ago
ALCALABRUTINIB FAILING
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
Why are clinical trials our only option for the most part, why does our treatments cause more mutations and a cancer that is harder to treat, at some point, our cancer will outpace our options, and we will have none. We must be very intelligent on our line of treatments and make sure each we choose wisely
CAM729
in
CLL Support
2 years ago
rituxan treatment
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
My CLL has caused a condition called warm autoimmune hemolytic anemia and they are wanting to start Rituximab to keep my hgb counts from tanking. I am not a big fan of treatments and have refused treatments several times for other cancers. I am just wondering about your alls experience with this
Bluegillking
in
CLL Support
2 years ago
Optical genome mapping: a promising new tool to assess genomic complexity in CLL
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
In CLL, cytogenetic testing relies on a few well-established techniques https://powerfulpatients.org/2019/10/28/cll-genetic-tests-explained/ while the new method of optical genome mapping (OGM) remains strictly experimental. Preliminary research, though, does suggest that OGM can enhance cytogenomic
bennevisplace
in
CLL Support
2 years ago
Explore NKF’s Kidney Learning Center!
Are you interested on getting on the kidney transplant waitlist? View our free, self-paced beginner’s guide to kidney transplant through our new online resource. Take the first step on your transplant journey today! Kidney Learning Center: First Steps to Transplant https://learningcenter.kidney.org
Are you interested on getting on the kidney transplant waitlist? View our free, self-paced beginner’s guide to kidney transplant through our new online resource. Take the first step on your transplant journey today! Kidney Learning Center: First Steps to Transplant https://learningcenter.kidney.org
KateyC_NKF
Partner
in
Kidney Dialysis
2 years ago
Clinical Pharmacist - I'm quite cross!
I received a letter from the Doctors asking me to make a telephone appointment on certain dates to speak to a clinical pharmacist regarding treatment for COPD. I telephoned the doctors, yesterday and after a long hold spoke to the receptionist who gave me an appointment for today for 11:30. I had one
I received a letter from the Doctors asking me to make a telephone appointment on certain dates to speak to a clinical pharmacist regarding treatment for COPD. I telephoned the doctors, yesterday and after a long hold spoke to the receptionist who gave me an appointment for today for 11:30. I had one
anng18
in
Lung Conditions Community Forum
2 years ago
LET’S GET READY FOR WORLD CLL DAY ON 1 SEPTEMBER!
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
WORLD CLL DAY 2022 is only a few weeks away!
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability
HAIRBEAR_UK
Founder Admin
in
CLL Support
2 years ago
PI3K inhibitors (idelalisib,copanlisib, duvelisib, parsaclisib, umbralisib, zandelisib, ACP-319) in CLL: where do we go from here?
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
While we have never been as spoiled for treatment choice as we are now, PI3K inhibitor safety is being very closely monitored by the FDA. So, it's timely that Sigrid S Skanland and Jennifer R Brown have written a peer-reviewed Haematologica early view paper that discusses [i]"the current status of
CLLerinOz
Administrator
in
CLL Support
2 years ago
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