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New to the group. Should I worry concerning my latest blood results?
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On W&W. 53 years old. I had an appointment with my Cll doctor one month ago and a bit worried. Wbc 48 000 Monocytes 12000 ALC 29 000 LDH 550 I understood
povhgc
in
CLL Support
6 months ago
confused!!!
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became unwell end of July this year , tests started and diagnosed CLL it took a further few tests like MRI CT Scan and bone marrow biopsy only to be told
Dragonfly766
in
CLL Support
6 months ago
Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
AussieNeil
Partner
in
CLL Support
6 months ago
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AI and CLL
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to discover new novel proteins at a rate beyond what could ever happen in a lab. We are likely to see an uptick in treatments and maybe even cures
MovingForward4423
in
CLL Support
6 months ago
Fatigue issues taking Eltroxin combined with Hydroxy for ET
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Wonder if anyone else with ET on this forum has had additional challenge managing intense fatigue when taking Levothyroxine, trade name Eltroxin, a thyroid hormone supplement, combined with Hydroxy 500mg daily? Started Eltroxin February this year. Previously well managed situation. Now life is more of
Norma1831
in
MPN Voice
9 months ago
Patient Power 2022 ASH Conference Report: Deep Dive into CLL Dec 14, 2022 Nicole Lamanna, MD
ASH Conference Coverage - 2022 ASH Conference Report: Deep Dive into CLL Dec 14, 2022 Nicole Lamanna, MD Associate Clinical Professor of Medicine https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
/2022-ash-conference-report-deep-dive-into-cll Patient Power host Michele Nadeem-Baker is joined
ASH Conference Coverage - 2022 ASH Conference Report: Deep Dive into CLL Dec 14, 2022 Nicole Lamanna, MD Associate Clinical Professor of Medicine https://www.patientpower.info/chronic-
lymphocytic
-
leukemia
/2022-ash-conference-report-deep-dive-into-cll Patient Power host Michele Nadeem-Baker is joined
lankisterguy
Volunteer
in
CLL Support
1 year ago
How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits Advisory Committee (PBAC). In March 2024, PBAC will again consider a submission to recommend a 15-month combination therapy of ibrutinib plus venetoclax
CLLerinOz
Administrator
in
CLL Support
6 months ago
symptoms of CLL
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
I was diagnosed w CLL in Dec 2019. I’m on a watch and wait protocol with blood work every 6 months. My question is if I’m not on any meds yet, can I still have symptoms of occasional extreme fatigue, recurrent infections and sometimes feeling like I’m always fighting off something? Is this caused by
RockymtnTexan
in
CLL Support
6 months ago
new to Group
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
hello, I’m New to this group. I’m hoping for some basic information regarding how you live with leukemia. I have chronic kidney disease. I received a deceased donor transplant 13 months ago. My transplant team has had real difficulty dealing with dangerously low white blood cell count. I’ve received
Jayhawker
in
CLL Support
6 months ago
Richter's Transformation: standardized therapy or clinical trial
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
My father was diagnosed CLL 4 years ago and hasn't been treated. Recently he did a PET CT because of enlarged lmpth nodes and doctor said it's very possible he has Richter's Transformation. May I know if any one has same experience with Richters but not treated before? Could you share the treatment and
janeychen5712
in
CLL Support
6 months ago
update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
6 months ago
CLL leukemia
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
What does it mean when your white blood count increases from 27 to 30.6 10^9/L 4.0-10.0 10^9/L
Bobby13
in
CLL Support
6 months ago
HCT Jumped 3%.
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
I haven't had to have a phlebotomy for months and my HCT was hanging in at 45 or below. I switch from HU to Pegasus 2 1/2 months ago and all of a sudden my HCT jumped up 3%. It must be because of the very low dose I started with which was 45mcgs. I went up to 60mcgs after 6 weeks and now he wants me
russkatt
in
MPN Voice
9 months ago
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
From MedPage Today, by Charles Bankhead, Senior Editor, MedPage Today November 28, 2023, Last Updated November 29, 2023. Posted FYI without comment: [i]
FDA Investigating 'Serious Risk' of Malignancy After CAR-T Therapy - Applies to all approved therapies, but benefits still outweigh risks, agency
cujoe
in
CLL Support
6 months ago
Promising research is currently underway to use humanized bispecific single-domain antibodies
These antibodies engage different sub-types of T-lymphocytes to treat chronic
lymphocytic
leukemia
/small
lymphocytic
leukemia
CLL/SLL.
These antibodies engage different sub-types of T-lymphocytes to treat chronic
lymphocytic
leukemia
/small
lymphocytic
leukemia
CLL/SLL.
spi3
in
CLL Support
2 years ago
CLL and now very elevated Monocytes
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
I am under treatment for CLL using Venetoclax. It has been going well and my lymphocytes are controlled with a minimal dosage of Venetoclax of 50 mg.I just had labs yesterday and in 3 weeks my monocytes shot p from 5% to 15% and absolute count from. 08 to over 1000. I am so concerned I am developing
ralphfelo
in
CLL Support
6 months ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
10 months ago
New era for myelofibrosis treatment with novel agents beyond JAK2 -inhibitor monotherapy
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
There is an urgent unmet medical need for treatments with a novel mechanism of action that can modify the underlying pathophysiology and affect the disease course of myelofibrosis. This review highlights the role of B-cell lymphoma (BCL) protein BCL-extra large (BCL-XL) in disease pathogenesis and the
Manouche
in
MPN Voice
10 months ago
Have I progressed to PV?
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
Hello everyone, I have had ET, Jak2+ for 5-1/2 years and my platelets have been rising the past 1-1/2 years above normal range. Recently, I had routine blood work ordered by my GP and the results showed an almost 200 thousand increase in platelets since May from 629 to 805. I messaged my MPN specialist
mbr8076
in
MPN Voice
10 months ago
Zanubrutinib or O&V
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib. We are trying to make the best decision, but struggling. They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems
Cb1391
in
CLL Support
7 months ago
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