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Today is World Leukemia Day
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
Dear friends Today, patients, patient groups, clinical groups and organisations across the world are uniting to raise awareness of leukaemia. By publicising the signs and symptoms we are working together to help leukaemia patients get diagnosed and provide better outcomes for them. You can make
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
Newly diagnosed and hoping for a bit of advice
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Hi, Thankyou to all those who have put so much into this site. Its been a huge help in the last few days since I started trying to find out more about SLL. I'm a 46 year old male in the UK who felt ill (exhausted, night sweats, generally weak and achy muscles) for around 2 years with the symptoms very
Pdaquinas
in
CLL Support
4 years ago
Anyone have experience with Venclexta capped at 200 mg?
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
I am a 62 yr old woman and will be starting Obinutuzumab in 2 days with Venclexta added my 4th week. I was diagnosed with SLL/CLL May 2019 and was watch and wait until now. It has been confined to my lymph nodes and my blood tests have been in the normal range. Treatment is starting due to increase in
Flute117
in
CLL Support
4 years ago
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Ibrutinib plus fludarabine, cyclophosphamide, and rituximab as initial treatment for younger patients with CLL
This is an abstract from the Lancet article. There's a fair bit of detail missing regarding the profile of the CLL patients in terms of IgHV mutation status etc and the follow up is still very short but they are claiming that this is the best response ever published in patients with CLL unrestricted
This is an abstract from the Lancet article. There's a fair bit of detail missing regarding the profile of the CLL patients in terms of IgHV mutation status etc and the follow up is still very short but they are claiming that this is the best response ever published in patients with CLL unrestricted
Jm954
Administrator
in
CLL Support
4 years ago
Alan Hyde - QE Hospital Birmingham.
Many people who have received their liver transplant at the QE, will most likely know of Alan Hyde. Alan has been a strong supporter of the QE for over 14-years, visiting patients on the liver transplant ward (726), Alan was also chairman of the “Queen Elizabeth Liver Patients Support Group”, and featured
Many people who have received their liver transplant at the QE, will most likely know of Alan Hyde. Alan has been a strong supporter of the QE for over 14-years, visiting patients on the liver transplant ward (726), Alan was also chairman of the “Queen Elizabeth Liver Patients Support Group”, and featured
Richard-Allen
in
British Liver Trust
4 years ago
CLL with CAD
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
CLL with Cold Agglutinin Disease New to the group, 72 yr old male, served in Vietnam from 1967 to 1970 Diagnosed in Feb 2020 Would like to hear from anyone CLL and CAD (Cold Agglutinin Disease)
Hidden
in
CLL Support
4 years ago
Feeling the pain
Last November I had three short courses of Brachytherapy following a hysterectomy for womb cancer. I thought all was going okay but began to have rectal bleeding. To cut a long story short I had a flexi-sig and transanal ultrasound done today. For the first time I saw the issues. Firstly a polyp
Last November I had three short courses of Brachytherapy following a hysterectomy for womb cancer. I thought all was going okay but began to have rectal bleeding. To cut a long story short I had a flexi-sig and transanal ultrasound done today. For the first time I saw the issues. Firstly a polyp
Zigoin
in
Pelvic Radiation Disease Association
4 years ago
NIGHT SWEATS
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
I would appreciate input from members on Night Sweats. Although I am a little over two years in W&W, and I understand very well the symptoms my Hematologist/Oncologist will look for regarding triggers for treatment (RBC count, Platelet Count, increased infections, and Night Sweats) I am uncertain if
wizzard166
in
CLL Support
4 years ago
Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:- [i]- Are you ready to have your say on the support, care & information patients need? - Are you ready for your experience to help others in the future? - Are you
AussieNeil
Partner
in
CLL Support
4 years ago
Towards personalised management of CLL? Ibrutinib study reveals new way to gauge patients’ response to treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
Excerpts from https://www.genengnews.com/topics/omics/cll-drug-study-finds-single-cell-analysis-can-gauge-response-rate/ *** Ibrutinib, a Bruton tyrosine kinase (BTK) inhibitor, has remarkable efficacy in most patients with CLL. It is becoming the standard of care for most patients requiring treatment
bennevisplace
in
CLL Support
4 years ago
UK CLL Forum - updated post lockdown guidance for the management of CLL
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
During the height of the COVID19 pandemic the UK CLL Forum issued guidance on managing CLL patients. This guidance has now been updated with post lockdown guidance. Many of us will be disappointed to see that the first point is to continue to 'consider telephone or video conference appointments if feasible
Jm954
Administrator
in
CLL Support
4 years ago
How to tell young children
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Hi, my husband is in the stages of being confirmed to have CLL. He already has CML which he is in remission with, and was diagnosed with when he 25 (now 38). We have a 3.5yrs son, and I was wondering if anyone has any tips how to approach the subject with him. He knows things are not right at home, and
Savage27
in
CLL Support
4 years ago
Can u ever stop dialysis
Hello I am 47 years old I started dialysis March 2020. My question may song strange but do people ever get off dialysis without having a kidney transplant with end stage renal failure
Hello I am 47 years old I started dialysis March 2020. My question may song strange but do people ever get off dialysis without having a kidney transplant with end stage renal failure
Lady1blue
in
Kidney Dialysis
4 years ago
SF3B1 Mutations
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
We've had a couple of members mention that they are positive for SF3B1 Mutations so I thought it would be worth a short simplified post about it. SF3B1 are predominantly sub clonal genetic events in CLL and are not unique to CLL as they are also found in other haematological disease such as myelodysplastic
Jm954
Administrator
in
CLL Support
4 years ago
FCR oral versus iv
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
Hi I have read that cyclophosphamide and fludarabine can be given orally instead of IV. Is oral better tolerated in terms side effects? I guess oral formulation avoids need to attend hospital more frequently for infusions too. Is there anything else I should consider if needing tx with FCR? Thanks
CarpeDiem03
in
CLL Support
4 years ago
Worried About Your CLL? A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! (Applies to USA Residents only)
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program ( Unfortunately this is available to USA Residents only - Sorry) - We believe that access to CLL expert care is critical for every patient to receive his or her best possible care. Access to a CLL expert provides proven
lankisterguy
Volunteer
in
CLL Support
4 years ago
Immunophenotyping
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
Hi, just got my result from immunophenotying said it show classic 5 of 5 for CLL do not know what that means diagnosed with SLL in December 2016. have had doubling of lymphocytes and WBC since March this year and also some night sweat very easily fatigued, should be starting Acalabrutinib shortly seeing
jaybrjod
in
CLL Support
4 years ago
Stimulant laxatives (bisacodyl, senna and sennosides, sodium picosulfate) available over-the-counter: new measures to support safe use
Much of the press has carried this story in various forms. I thought taking you to the original might be helpful. Do read carefully. [i]
Stimulant laxatives (bisacodyl, senna and sennosides, sodium picosulfate) available over-the-counter: new measures to support safe use
We have introduced
Much of the press has carried this story in various forms. I thought taking you to the original might be helpful. Do read carefully. [i]
Stimulant laxatives (bisacodyl, senna and sennosides, sodium picosulfate) available over-the-counter: new measures to support safe use
We have introduced
helvella
Thyroid UK
in
Thyroid UK
4 years ago
Blood results in CBC
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again. I am so confused. The receptionist said they never diagnose until at least six months of blood results.
gustave
in
CLL Support
4 years ago
Free Prescription home deliveries appear to have been stopped by Boots
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks ago. I rang today and was told as the Government had stopped support for the vulnerable, they has stopped free deliveries. The very nice manager
Harvist
in
CLL Support
4 years ago
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