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Immune system changes during BTKi treatment
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Hi, as a relative newbie here, please forgive me if this is a really naive question. I am soon to begin treatment with a BTKi drug. I know that having (a mutated form) of CLL means that my immune system is significantly suppressed and that BTKi treatment will further inhibit the immune system. My haematologist
Fogey
in
CLL Support
6 months ago
MRD Results
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
My hubby's CLL Dr called today and gave us the good news. My hubby's blood has zero CLL, and his bone marrow dropped 25% to .12%. His Dr wants him to keep taking his venetoclax and acalabrutinib so that his bone marrow gets CLL lower or totally out. To date, my hubby will be on this treatment 1 year
spi3
in
CLL Support
6 months ago
Imnusupressants Post Transplant
Hello,Im wondering how this whole suppressed immune system works? My husband and I have got covid (6 weeks post TP for him). The whole household has pretty much had it all at the same time, but how will hubbys recovery differ? Is he less likely to recover as quick, more prone to secondary infection
Hello,Im wondering how this whole suppressed immune system works? My husband and I have got covid (6 weeks post TP for him). The whole household has pretty much had it all at the same time, but how will hubbys recovery differ? Is he less likely to recover as quick, more prone to secondary infection
Ewife
in
British Liver Trust
20 days ago
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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
Tacrolimus vs cyclosporin
Hi, I am currently working with my rheumatologist to plan for second pregnancy. My daughter is 3.5 years old and I was on tacrolimus during my pregnancy (I usually take MMF). I remained relatively well and stable throughout but there were alot of issues with maintaining the tacrolimus concentration
Hi, I am currently working with my rheumatologist to plan for second pregnancy. My daughter is 3.5 years old and I was on tacrolimus during my pregnancy (I usually take MMF). I remained relatively well and stable throughout but there were alot of issues with maintaining the tacrolimus concentration
SonyaNME
in
LUPUS UK
1 month ago
Good News!!!
My dr. approved the buprenorphine for me. I am thinking positive that it will work. She is giving me the patch. I am excited. I have to discontinue the horizant though which surprised me and of course discontinue the oxycodone. Hopefully now you won't have to listen to me complaining and I will
My dr. approved the buprenorphine for me. I am thinking positive that it will work. She is giving me the patch. I am excited. I have to discontinue the horizant though which surprised me and of course discontinue the oxycodone. Hopefully now you won't have to listen to me complaining and I will
lorri214
in
Restless Legs Syndrome
2 months ago
itching
I had a transplant 18 months ago and 6 days ago the hospital reduced my Tacrolimus and increased my Prednisolone to improve my kidney function (although it was no worse than it has been since the transplant). I’m gradually increasing the Tac and decreasing the Prednisolone but today lve started itching
I had a transplant 18 months ago and 6 days ago the hospital reduced my Tacrolimus and increased my Prednisolone to improve my kidney function (although it was no worse than it has been since the transplant). I’m gradually increasing the Tac and decreasing the Prednisolone but today lve started itching
Pie-eater
in
British Liver Trust
2 months ago
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
Vasculitis in the pancreas?
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened
Sandalsforever
in
Vasculitis UK
2 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
7 months ago
Changing Medication
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Hi I’m just looking for some advice on Targinact and just Oxycodone please. My neurologist wrote to my GP requesting that I be prescribed Targinact 10mg at night and 5mg mornings increasing if necessary by 5mg increments to maximum of 20mg twice a day, also changing the Venlafaxine I take to either
Felixstowe
in
Restless Legs Syndrome
3 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
7 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
7 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
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
B LARGE CELL DIFFUSE LYMPHOMA AFTER 5 YEAR OF POST KIDNEY TRANSPLANT
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
I got my kidney transplant in dec 2018 now In nov 2024 suffered from NON hodgkin lymphoma now only on tacrolimus 5mg daily .Any advice regarding this then plz
bal_123
in
Kidney Transplant Patient Support
4 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
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