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I’ve been told I’ve got high ferritin levels, I’ve been feeling very ill with stomach pains/nausea etc for 15 months ,
Need help , can’t see heaemotology until phone appointment in November, feeling desperate to get well . Also have fibromyalgia, D.disc disease, arthritis, Sjorgren syndrome, take 25mg levothyroxine. And diverticula disease. Tired constantly. GP just treating me for IBS with Buscopan and cyclizine
Need help , can’t see heaemotology until phone appointment in November, feeling desperate to get well . Also have fibromyalgia, D.disc disease, arthritis, Sjorgren syndrome, take 25mg levothyroxine. And diverticula disease. Tired constantly. GP just treating me for IBS with Buscopan and cyclizine
Lulumac
in
British Liver Trust
3 years ago
Treatment and ocular lymphocytic leukemia
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
My diagnosis in 2017Trisomy12 unmutated 500000 wbc 397 absolute lymphocite Count 6.1 hemoglobin I joined a threefold trial Ibrutinib, Obinutuzumab and Venetoclax. When I had uveitis on both eyes I felt it was temporarily but treatment was necessary. I didnt know then that there is ocular CLL and that
mickimauser11
in
CLL Support
3 years ago
Looking for alternatives with BTK C481 resistant CLL
Looking for alternatives. I have had 3 prior treatments from FCR to other chemo to Veneclax and Imbrutnib which was working great until my counts went up again. Turns out I have developed a BTK mutation. Been seeking out trials and wanted to try loxo-305 (Pirtobrutinib) but it was all filled up and they
Looking for alternatives. I have had 3 prior treatments from FCR to other chemo to Veneclax and Imbrutnib which was working great until my counts went up again. Turns out I have developed a BTK mutation. Been seeking out trials and wanted to try loxo-305 (Pirtobrutinib) but it was all filled up and they
micg
in
CLL Support
3 years ago
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The Leukemia & Lymphoma Society’s National Patient Registry COVID-19 vaccination antibody results - published today (Greenberg et al)
As a valued member of The Leukemia & Lymphoma Society’s National Patient Registry, a project of the Michael J. Garil Patient Data Collective, we wanted you to be among the first to know about COVID-19 vaccination antibody results we published today (Greenberg et al., 2021). https://i7.t.hubspotemail.net
As a valued member of The Leukemia & Lymphoma Society’s National Patient Registry, a project of the Michael J. Garil Patient Data Collective, we wanted you to be among the first to know about COVID-19 vaccination antibody results we published today (Greenberg et al., 2021). https://i7.t.hubspotemail.net
lankisterguy
Volunteer
in
CLL Support
3 years ago
Hyaluronic Acid and CLL
I have been using a Revitalift over the counter face serum that is 1.5% Hyaluronic Acid sold as a treatment for wrinkles and aging skin. I seem to remember somewhere that there is a tie to CLL. Does anyone have any info on this? TIA
I have been using a Revitalift over the counter face serum that is 1.5% Hyaluronic Acid sold as a treatment for wrinkles and aging skin. I seem to remember somewhere that there is a tie to CLL. Does anyone have any info on this? TIA
CBME
in
CLL Support
3 years ago
What Factors Impact CLL Treatment Options? -- Patient Empowerment Network --Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan
What Factors Impact CLL Treatment Options? May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic lymphocytic leukemia (CLL) treatment options? Dr. Lindsey Roeker notes important considerations that
What Factors Impact CLL Treatment Options? May 14, 2021 click to view video https://powerfulpatients.org/2021/05/14/what-factors-impact-cll-treatment-options/ What are the factors that impact chronic lymphocytic leukemia (CLL) treatment options? Dr. Lindsey Roeker notes important considerations that
lankisterguy
Volunteer
in
CLL Support
3 years ago
Nubie
Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Currently receiving immunoglobulin infusions monthly
Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago. Currently receiving immunoglobulin infusions monthly
Mother1943
in
CLL Support
3 years ago
Frontline Ibrutinib/Venetoclax Elicits Durable Responses in CLL With Undetectable MRD
[i]
Fixed-duration ibrutinib plus venetoclax produced superior progression-free survival when compared with chlorambucil plus obinutuzumab in the frontline treatment of patients with chronic lymphocytic leukemia, with durable responses observed in those who achieved undetectable minimal residual
[i]
Fixed-duration ibrutinib plus venetoclax produced superior progression-free survival when compared with chlorambucil plus obinutuzumab in the frontline treatment of patients with chronic lymphocytic leukemia, with durable responses observed in those who achieved undetectable minimal residual
lankisterguy
Volunteer
in
CLL Support
3 years ago
Long-Term Data Showcase the Clinical Utility of Fixed-Duration Venetoclax/Obinutuzumab in Treatment-Naïve CLL
[i]
Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions compared with chemoimmunotherapy in elderly patients with previously untreated chronic lymphocytic leukemia and comorbidities.
presented by Othman Al-Sawaf, MD reported July 6, 2021 by Jessica Hergert https
[i]
Fixed-duration venetoclax plus obinutuzumab demonstrated prolonged remissions compared with chemoimmunotherapy in elderly patients with previously untreated chronic lymphocytic leukemia and comorbidities.
presented by Othman Al-Sawaf, MD reported July 6, 2021 by Jessica Hergert https
lankisterguy
Volunteer
in
CLL Support
3 years ago
Sigmoiditis
I had a colonoscopy years ago - as I had a positive screening for blood (because I had a haemorrhoid). Years later these sent me another bowel screening kit - and I thought that it would be another false-negative, so I did not bother sampling or sending. Years after that (two years ago) I had lower abdominal
I had a colonoscopy years ago - as I had a positive screening for blood (because I had a haemorrhoid). Years later these sent me another bowel screening kit - and I thought that it would be another false-negative, so I did not bother sampling or sending. Years after that (two years ago) I had lower abdominal
S11m
in
Colon Cancer Connected
3 years ago
Kidney issues post liver transplant
Hi I'm 1 year post liver transplant, but my kidneys seem to be taking a hit. My GFR is reducing at each blood test. It is now 39 and drops by about 5 every time. They've not said if it's now CKD but I'm worried as the internet says 39 is stage 3B. They have reduced my tacrolimus to 1mg twice daily,
Hi I'm 1 year post liver transplant, but my kidneys seem to be taking a hit. My GFR is reducing at each blood test. It is now 39 and drops by about 5 every time. They've not said if it's now CKD but I'm worried as the internet says 39 is stage 3B. They have reduced my tacrolimus to 1mg twice daily,
TBSW
in
British Liver Trust
3 years ago
Doubling of absolute Lymphoctes
It has been 11 months now since I was diagnosed with CLL. Thereafter I have been tracking my WBC and Lymphocytes . The trend curve over a year is in the attached picture. I was also taking green tea extract , curcumin , vitamin C and D since being diagnosed. Until now did not experience any B symptoms
It has been 11 months now since I was diagnosed with CLL. Thereafter I have been tracking my WBC and Lymphocytes . The trend curve over a year is in the attached picture. I was also taking green tea extract , curcumin , vitamin C and D since being diagnosed. Until now did not experience any B symptoms
WilliamTan
in
CLL Support
3 years ago
Leukaemia Care Interview
Hello all, I have just finished recording an interview with Leukaemia Care for use in their Spot Leukaemia Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now. I spoke about first finding a raised lymph node and the progression of ultra
Hello all, I have just finished recording an interview with Leukaemia Care for use in their Spot Leukaemia Early publicity in September. I think it went well and covered my story from pre diagnosis through to where I am now. I spoke about first finding a raised lymph node and the progression of ultra
kitchengardener2
in
CLL Support
3 years ago
The Leukemia & Lymphoma Society’s (LLS) Co-Pay Assistance Program assists with out-of-pocket expenses up to $11,000
Co-Pay Assistance Program https://www.lls.org/support-resources/financial-support/co-pay-assistance-program - The Leukemia & Lymphoma Society’s (LLS) Patient Financial Assistance team is dedicated to removing barriers to care by providing financial support to blood cancer patients. Our Co-Pay Assistance
Co-Pay Assistance Program https://www.lls.org/support-resources/financial-support/co-pay-assistance-program - The Leukemia & Lymphoma Society’s (LLS) Patient Financial Assistance team is dedicated to removing barriers to care by providing financial support to blood cancer patients. Our Co-Pay Assistance
lankisterguy
Volunteer
in
CLL Support
3 years ago
Experience with Tacrolimus with or without Azathioprine
Hi all! My drs are suggesting to put me on tacrolimus alongside AZA to help with my joint pain. Has anyone been on tacrolimus? With or without AZA or another immunosuppressant? How is your experience? Anyone have any knowledge/experience of long-term tacrolimus? Also, I got told by the nurse
Hi all! My drs are suggesting to put me on tacrolimus alongside AZA to help with my joint pain. Has anyone been on tacrolimus? With or without AZA or another immunosuppressant? How is your experience? Anyone have any knowledge/experience of long-term tacrolimus? Also, I got told by the nurse
Sandy1212
in
LUPUS UK
3 years ago
Has anyone used cordyceps as an adjunctive treatment for kidney disease?
Cordyceps worm mold is widely used in China to treat kidney disease, and some scientific studies indicate that it may reduce creatinine values in patients with chronic kidney disease. I have never found found much personal benefit from it. Conclusions of recent Chinese study: "Current evidence shows
Cordyceps worm mold is widely used in China to treat kidney disease, and some scientific studies indicate that it may reduce creatinine values in patients with chronic kidney disease. I have never found found much personal benefit from it. Conclusions of recent Chinese study: "Current evidence shows
Falkenhayn
in
Kidney Transplant Patient Support
3 years ago
Nutrition and Cll
I was diagnosed with Cll 3 months ago but my GP doctor suspected it a year ago. I am on W&W. I am wondering if I need to be on any kind of special diet and what supplements to take or not to take? The hematologist asked for a list of prescriptions and supplements I take but did not comment on them.
I was diagnosed with Cll 3 months ago but my GP doctor suspected it a year ago. I am on W&W. I am wondering if I need to be on any kind of special diet and what supplements to take or not to take? The hematologist asked for a list of prescriptions and supplements I take but did not comment on them.
sugar03
in
CLL Support
3 years ago
MBL is now CLL
Hi all, My MBL has progressed to CLL stage 1 after 8 years which I am struggling to come to terms with. I am now 51. Small glands in neck and groin and possibly a slightly enlarged spleen my lymphocytes were around 12-14 For couple of years but shot up to 24 recently. I am getting scams in 3 months.
Hi all, My MBL has progressed to CLL stage 1 after 8 years which I am struggling to come to terms with. I am now 51. Small glands in neck and groin and possibly a slightly enlarged spleen my lymphocytes were around 12-14 For couple of years but shot up to 24 recently. I am getting scams in 3 months.
Billy_Oz
in
CLL Support
3 years ago
8 months
So after 8 months on Ibrutinib my spleen is close to normal size, my blood count is normal, but 1/4 to 1/3 of my lymphocytes are still CLL. Side effects are gone, although I do get the odd day with stiff joints. Great progress, and my life is almost normal again. I didn’t respond to the Covid vaccines
So after 8 months on Ibrutinib my spleen is close to normal size, my blood count is normal, but 1/4 to 1/3 of my lymphocytes are still CLL. Side effects are gone, although I do get the odd day with stiff joints. Great progress, and my life is almost normal again. I didn’t respond to the Covid vaccines
809123
in
CLL Support
3 years ago
Relapsing on Ibrutinib
Hello everyone, as I mention here a few weeks ago, my treatment with Ibrutinib is going to end soon due to (Dr. thinks) a mutation. I am going to see the Oncologist in 2 weeks and I have to make a decision which treatment I want to be put on. There are two options open for me. One is Venetoclax and
Hello everyone, as I mention here a few weeks ago, my treatment with Ibrutinib is going to end soon due to (Dr. thinks) a mutation. I am going to see the Oncologist in 2 weeks and I have to make a decision which treatment I want to be put on. There are two options open for me. One is Venetoclax and
Doremefasol
in
CLL Support
3 years ago
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