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Venetoclax
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
Hi all Well we finally got to see a specialist. They did a bone marrow biopsy which showed 50% CLL infiltration on top of the pancytopenia. They have suggested treatment with Venetoclax only which they have said may reduce the frequency of transfusions which is currently weekly. I have only ever
JoeMcDote
in
CLL Support
6 months ago
constipation anyone ? Here’s a good solution
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
hi everyone I ve read here and there posts regarding constipation. If you’re affected you might like to try my homemade rocket muesli! I prefer to make my own because I like organic stuff and knowing what’s gone into my food. you could of course simply buy no sugar muesli and add 2 tablespoons ground
Loubprv
Volunteer
in
MPN Voice
9 months ago
PV & Gene Editing for Sickle cell anemia
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
Has anyone been following the latest news on treatment for sickle cell anemia? Since many of us are treated with hydroxyurea which is approved for sickle cell anemia, I was wondering if this may be in our future? "The F.D.A. approved the first gene editing therapy ever, for sickle cell disease, a debilitating
ERei
in
MPN Voice
7 months ago
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Is it ok to smoke marijuana or to take edibles with cll?
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
It gives me relief from general anxiety and unsettling feeling of going to a medical facility. Has anyone had any experience with using this for the two reasons mentioned above? Thank you.
Jessielab
in
CLL Support
6 months ago
Diagnosed 2015 complete CBC has changed
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
last phlebotomy was in June of 2023, since then my HCT is stuck @ 39, HGB is now @ 11.9, MCV,MCH,MCH are dropping each month, RBC is stable @ 5. My ferritin is now 7 with iron @ 21 and % sat @. 5. TIBC AND UIBC are elevated. Fecal test normal no blood. I am exhausted no energy sleeping way too
Pickleball11
in
MPN Voice
9 months ago
Should I be worried?
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Hi All, my Haemo Lady, just called me with my Bone Marrow Biopsy results, She, said they were heavily infiltrated with CLL. A recent body scan also showed a large lump in my stomach, she is not sure if it is related to my CLL, or perhaps an aggressive lymphoma. She has ordered a needle biopsy of this
Vindicatrix
in
CLL Support
6 months ago
venetoclax and obinutuzumab treatment for cll
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
Hi, I have finished the above 12 months treatment for cll tp53 mutated, I now have 2 monthly checks and my lymphocytes are low, is this a cause for concern?
dellkota
in
CLL Support
6 months ago
First six-month blood test, and my lymphocytes have gone down!
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
I’m soon to be 55. I was diagnosed in the UK with MBL this summer. My lymphocytes were at six with over 50% of them monoclonal cells. I’ve just had my six-month check. I’ve come down to 4.8. I know that these numbers can move around quite a lot, but for now I’m really happy with the trend. I did change
Jazzandblues
in
CLL Support
6 months ago
Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len ++++++++++++++++++++++++++++ Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective
lankisterguy
Volunteer
in
CLL Support
10 months ago
CLL Patients -- Venclexta
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
I am looking for CLL patients in the U.S. who have been diagnosed within 3-4 years and who are taking Venclexta as their treatment. I work with an organization (Patient Power) that shares patient stories to help advocate and educate others on various cancers. By sharing your journey, you can help support
AlexCam
in
CLL Support
7 months ago
Statin use, survival and incidence of thrombosis among older patients with polycythemia vera and essential thrombocythemia
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Conclusions These findings suggest that it may be important to incorporate statins into the therapeutic strategy for older adults with PV and ET. https://onlinelibrary.wiley.com/doi/10.1002/cam4.6528
Manouche
in
MPN Voice
10 months ago
Changing from hydroxy to Analgride
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Hello again to all the people on this wonderful. group. Following post from 10 days ago, when I was taken off hydroxy due to anaemia, I had appt. today, & will be having another bone marrow check, & possibly blood transfusion shortly. Looks as though I,ll be going onto Analgride instead. Can I ask people
Didgeridoo2
in
MPN Voice
10 months ago
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
7 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
7 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
7 months ago
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
7 months 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
7 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
7 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
7 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
7 months ago
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