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Doctor mentioned Richters???
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
I am on the Bruin trial and was randomized to Arm B which is Idelalisib and Rituximab ( 6 months of infusions ). My bloodwork so far has shown slight improvement since the start in January of this year. Now at my last blood work and appointment the doctor has noticed some lymph nodes increasing in size
rcusher
in
CLL Support
1 year ago
APS - Increased Risk of Blood Clots
Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done? These blood tests check your antibodies (immunoglobulin) which are protective proteins (made by your plasma cells - WBC) produced by your immune system. They attach to foreign substances (antigens) such as bacteria, fungi
Has anyone with an MPN with JAK-2 had an Extended Antiphospholipid Profile done? These blood tests check your antibodies (immunoglobulin) which are protective proteins (made by your plasma cells - WBC) produced by your immune system. They attach to foreign substances (antigens) such as bacteria, fungi
Buggerbear
in
MPN Voice
2 years ago
Allogenic Stem Cell Transplant
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
I [i]received a Stem cell transplant six months ago. My decision was based on the availability of a suitable donor and being able to get to remission through aggressive chemotherapy. Other treatments had no effect on my rapidly growing leukemia. As of today I’m still in remission, showing 97% chimerism
GarciaB
in
MPN Voice
2 years ago
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Venetoclax Consolidation Achieves Durable Off-Treatment Remissions in Patient with High Risk CLL Who Have Been on Ibrutinib More Than a Year
This is something that some of our USA members have discussed with their doctors and it looks like the logic is correct. [i]"Patients (pts) receiving ibrutinib (ibr) for CLL rarely achieve complete remission (CR) with undetectable minimal residual disease (U-MRD). Therefore, indefinite ibr maintenance
This is something that some of our USA members have discussed with their doctors and it looks like the logic is correct. [i]"Patients (pts) receiving ibrutinib (ibr) for CLL rarely achieve complete remission (CR) with undetectable minimal residual disease (U-MRD). Therefore, indefinite ibr maintenance
Jm954
Administrator
in
CLL Support
1 year ago
BTK Degrader Shows Potential for Treating Refractory CLL and SLL
A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential for treating patients with double- and triple-refractory CLL or SLL who have experienced disease progression while on any covalent or non-covalent BTK inhibitor, as well as a BCL2 inhibitor. NX-2127 a BTK degrader has a novel
A novel Bruton's tyrosine kinase (BTK) degrader, NX-2127, has shown potential for treating patients with double- and triple-refractory CLL or SLL who have experienced disease progression while on any covalent or non-covalent BTK inhibitor, as well as a BCL2 inhibitor. NX-2127 a BTK degrader has a novel
Jm954
Administrator
in
CLL Support
1 year ago
CLL Webinar
Hi all Here is the link for today's CLL webinar. This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this
Hi all Here is the link for today's CLL webinar. This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this
Irishcll
in
CLL Support
1 year ago
Miracles of science and hope for us
https://www.bbc.com/news/health-63859184 [i]Per [/i] Juliette02[i]'s introduction, with an alternative report:[/i] [i]
Teenager
free after a world-first use of sophisticated cell engineering.
https://www.bbc.com/news/health-63859184 [i]Per [/i] Juliette02[i]'s introduction, with an alternative report:[/i] [i]
Teenager
free after a world-first use of sophisticated cell engineering.
nuji
in
CLL Support
2 years ago
Ground Glass Opacity, PET Scan and Biopsy
My first thoughts are cancer which is really scary as I lost both parents within 10 weeks of each other to cancer and my husband was diagnosed with
Leukaemia
two months ago. Has anyone else had GGO detected at a similar size to mine and if so can you share your experience please?
My first thoughts are cancer which is really scary as I lost both parents within 10 weeks of each other to cancer and my husband was diagnosed with
Leukaemia
two months ago. Has anyone else had GGO detected at a similar size to mine and if so can you share your experience please?
LouF
in
Lung Conditions Community Forum
1 year ago
JAK2V617F Allele Burden in Polycythemia Vera: Burden of Proof
Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and
Polycythemia vera (PV) is a hematopoietic stem cell (HSC) neoplasm defined by activating somatic mutations in the JAK2 gene and characterized clinically by overproduction of red blood cells, platelets, and neutrophils; significant burden of disease-specific symptoms; high rates of vascular events; and
Manouche
in
MPN Voice
2 years ago
ET accelerated progression
I now need to be treated to try to halt progression to acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
I now need to be treated to try to halt progression to acute
leukaemia
and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
Smdg
in
MPN Voice
2 years ago
LLS.ORG (USA) WHAT ARE YOUR TOP PRIORITIES FOR 2023?
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
Dear Advocate, Whether it’s making sure every patient can afford health insurance that works for them or advancing better treatments, LLS is committed to working tirelessly to advance policies that serve the needs of blood cancer patients and their families. In 2023 we will continue to work closely
lankisterguy
Volunteer
in
CLL Support
2 years ago
Diagnosis: "Favors Essential Thrombocythemia"
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
So this is good news. Except for one thing. My bmb did show some "mild to moderate reticulin fibrosis. Nevertheless the diagnosis favors the ET. My hematologist says that we will keep a close eye on bloodwork going forward. As I have the Calr 1 mutation and am already on Eliquis, no additional medication
Mtnlife
in
MPN Voice
2 years ago
Drug interactions/conflicts
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take Hydroxycarbamide. Amongst the many side effects from HC my regular blood tests have shown me to be borderline anaemic and my regular GP has monitored this for years - checking kidney & liver function, and also on Folate
quanglewangle
in
MPN Voice
2 years ago
Unexplained Fevers on exertion, please help advice needed
I was diagnosed with Lupus in August 2022 (f, 22) Since December of 2021 I’ve experienced regular and persistent fevers with little other symptoms (besides the classic lupus ones - joint paint, tiredness etc) - I was tested for lymphoma and
Leukaemia
etc, and there’s no sign of virus activity besides
I was diagnosed with Lupus in August 2022 (f, 22) Since December of 2021 I’ve experienced regular and persistent fevers with little other symptoms (besides the classic lupus ones - joint paint, tiredness etc) - I was tested for lymphoma and
Leukaemia
etc, and there’s no sign of virus activity besides
Tinylittlemac
in
LUPUS UK
1 year ago
Why do we have mutations?
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Why do we all have these bone marrow mutations? It cannot all be due to family DNA bad luck. My haemo told me that he is certain that my mutation is due to exposure to Benzene in petroleum products. In effect I have been poisoned by products which were supposed to be safe. Benzene compounds are still
Andrew8
in
MPN Voice
2 years ago
Can anyone figure out my MRD
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
Can anyone figure out what my MRD ( CLL cells per 10,000) is from this report. Component Your Value Standard Range Interpretation Flow cytometric immunophenotyping performed on the peripheral blood shows a small, dim kappa restricted B-cell population (representing ~98% of B cells, 6% of total
johnliston
in
CLL Support
1 year ago
CLL Educational Webinar
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
This educational webinar will give an overview of how CLL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences. What is new and what does this mean for patients? We will be joined by: Prof Paolo
Irishcll
in
CLL Support
1 year ago
Possible transformation to MF?
I know transforming to
leukaemia
isn’t common but not impossible! Anyone else in this position? Any advice appreciated.
I know transforming to
leukaemia
isn’t common but not impossible! Anyone else in this position? Any advice appreciated.
lizzziep
in
MPN Voice
2 years ago
Patient Empowerment Network New CLL Content March 2023
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
Dr. Michael Choi explains CLL patient trial opportunities and provides key questions to ask about clinical trial participation View Now >> https://powerfulpatients.org/2022/12/07/hesitant-to-participate-in-a-cll-clinical-trial-what-you-should-know/ - Developing CLL Research and Treatment News
lankisterguy
Volunteer
in
CLL Support
1 year ago
Relapse/Refractory CLL
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
Hi All, At my last appointment w/CLL specialist, in December, he noted that my CLL appears to be becoming active again and I'll likely need treatment again this year. :( Instead of the usual 6-months, he set our next appointment for 3-months, which is coming up this week. So, of course, I've been
TeamDirtyBoots
in
CLL Support
1 year ago
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