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Solutions needed to manage nerve pains ( Post herpetic neuralgia ) after shingles .
I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remission for about a year before relapse. Currently on Ibrutinib since 5 months now. I had shingles on my left leg about 3 months ago. Was treated with Acyclovir. The sores and blisters have gone but the nerve pains( especially
I was diagnosed of CLL in 2021. Had FCR as first line treatment. Was on remission for about a year before relapse. Currently on Ibrutinib since 5 months now. I had shingles on my left leg about 3 months ago. Was treated with Acyclovir. The sores and blisters have gone but the nerve pains( especially
Oldscores1
in
CLL Support
5 months ago
Epithelial Haemangiendothelioma - has anyone else been diagnosed with this rare cancer please?
Hello, Having been diagnosed with CLL back in February 2002 (age 50) I was successfully treated with FCR from August 2009 to February 2010 and remain MRD negative as at present. Breast cancer followed in April 2016, then bowel cancer in September 2018. A five year surveillance period followed the
Hello, Having been diagnosed with CLL back in February 2002 (age 50) I was successfully treated with FCR from August 2009 to February 2010 and remain MRD negative as at present. Breast cancer followed in April 2016, then bowel cancer in September 2018. A five year surveillance period followed the
alipali
in
CLL Support
5 months ago
Shingrix side effects
just wondered what people’s experiences are with side effects after Shingrix? I had the first vaccine and was ill the next day with headaches, chills and feeling awful. However after the second vaccine the side effects have been worse, add in : headaches, unable to concentrate, weakness and wave upon
just wondered what people’s experiences are with side effects after Shingrix? I had the first vaccine and was ill the next day with headaches, chills and feeling awful. However after the second vaccine the side effects have been worse, add in : headaches, unable to concentrate, weakness and wave upon
Mandy56
in
CLL Support
5 months ago
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Venetoclax for dummies
An example of an immunotherapy drug is rituximab, the "R" drug in FCR (the F drug in the combo is
fludarabine
, the C drug is cyclophosphamide). Rituximab binds to a protein on the surface of cancerous lymphocytes.
An example of an immunotherapy drug is rituximab, the "R" drug in FCR (the F drug in the combo is
fludarabine
, the C drug is cyclophosphamide). Rituximab binds to a protein on the surface of cancerous lymphocytes.
cajunjeff
in
CLL Support
1 year ago
splashsplash
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
UK based, CLL for 15 years, Treatments: FC, FCR, Ibrutinib, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
splashsplash
in
CLL Support
7 months ago
Ibrutinib stopped working, what’s next
Morning all,a quick recap on journey so far, FCR treatment which kept things at bay for 14 months, then onto Ibrutinib for 6 years approximately, currently lymph nodes at 5cm , next treatment starts in January Rituximab and Ventoclax for 2 years, just wondering if there are any alternatives? Thanks all
Morning all,a quick recap on journey so far, FCR treatment which kept things at bay for 14 months, then onto Ibrutinib for 6 years approximately, currently lymph nodes at 5cm , next treatment starts in January Rituximab and Ventoclax for 2 years, just wondering if there are any alternatives? Thanks all
Stacky66
in
CLL Support
7 months ago
hu CAR-T 19 IL-18 4th Generation Clinical Trial 90 Day Check-up With All of My Favorite Tests
It's been a long time since I have received a MRD negative diagnosis, 13 years to be exact, after my FCR treatment. All of the other treatments didn't require a BMB to confirm a negative reading, I had a few remissions, but they were just on paper. My blood counts were good, and I felt fine, but a relapse
It's been a long time since I have received a MRD negative diagnosis, 13 years to be exact, after my FCR treatment. All of the other treatments didn't require a BMB to confirm a negative reading, I had a few remissions, but they were just on paper. My blood counts were good, and I felt fine, but a relapse
steve5441
in
CLL Support
7 months ago
Chronic Lymphocytic Leukemia Therapy Guided by Measurable Residual Disease
From the New England Journal of Medicine 10th December 2023 [i]"The CLL treatment landscape has been transformed by targeted drugs. Continuous BTK inhibitor therapy has improved outcomes in patients with CLL. Fixed-duration venetoclax in combination with obinutuzumab or ibrutinib has also been shown
From the New England Journal of Medicine 10th December 2023 [i]"The CLL treatment landscape has been transformed by targeted drugs. Continuous BTK inhibitor therapy has improved outcomes in patients with CLL. Fixed-duration venetoclax in combination with obinutuzumab or ibrutinib has also been shown
Jm954
Administrator
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
8 months ago
R-CHOP Treatment
After FCR chemo 15 years ago and numerous oral medications since I am in chemo again. They tried a milder chemo to reduce my lymph nodes (they were huge). Some success, but not as much as I needed. So now I've had one round of R-CHOP. All that it has done for me so far is take my wbc's to 0.4. I'm
After FCR chemo 15 years ago and numerous oral medications since I am in chemo again. They tried a milder chemo to reduce my lymph nodes (they were huge). Some success, but not as much as I needed. So now I've had one round of R-CHOP. All that it has done for me so far is take my wbc's to 0.4. I'm
scorpio74944
in
CLL Support
8 months ago
secondary cancers
Hello I recently read an abstract on 6 year follow up of Ven + Obin. About 20% developed secondary cancers, half of these succumbed to these. The abstract did not address what types of cancers nor recommend specific screening. Does anyone have any DATA on 1. How this 20% compares to CLL patients
Hello I recently read an abstract on 6 year follow up of Ven + Obin. About 20% developed secondary cancers, half of these succumbed to these. The abstract did not address what types of cancers nor recommend specific screening. Does anyone have any DATA on 1. How this 20% compares to CLL patients
skipro
in
CLL Support
8 months ago
Viral infection to Covid and Flu booster gap.
Diag 2015. FCR 2018, 2023 still in full remission (FISH), My Lymphocyte count is 0.8. I am hypogammaglobulinaemic - IgA, G and M. I have been very fortunate in not having any infection since before diagnosis. Six weeks ago I became suddenly very unwell over the space of 2 hours. What followed was
Diag 2015. FCR 2018, 2023 still in full remission (FISH), My Lymphocyte count is 0.8. I am hypogammaglobulinaemic - IgA, G and M. I have been very fortunate in not having any infection since before diagnosis. Six weeks ago I became suddenly very unwell over the space of 2 hours. What followed was
JigFettler
Volunteer
in
CLL Support
10 months ago
moving on to next treatment-considering Nurex
I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmutated. Have had multiple treatments FCR,Bent&R,Ibrutinib and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would
I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmutated. Have had multiple treatments FCR,Bent&R,Ibrutinib and most recently clin trial Loxo 305 (40 months) numbers are changing along with resistance (mut PLg2). I know several members are on degrader (nurex) trial and would
Osprey69
in
CLL Support
10 months ago
mild struggles
hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. Then again in 2012. Various treatments. 2014 ibrutinib. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54.
hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. Then again in 2012. Various treatments. 2014 ibrutinib. 2016 Venetoclax and obinutuzumab on trial. It worked. 2021 CLL back in bone marrow. Now starting to grow slowly. Haemaglobin only 13. I like more. I’m 54.
Corin850
in
CLL Support
10 months ago
What’s next?
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily until I reached stage 4 which led to two years of Venclexta (400mg daily) treatments. Throughout all treatments I’ve had monthly bloodwork, yearly
Pokerguy
in
CLL Support
11 months ago
acalabrutinib and tegretol
Hi everyone My 70-year-old father had FCR five years ago, with great results. We’ve just been advised he needs to start treatment again, and they’ve chosen Acalabrutinib. He has been advised he had to go off his medication for epilepsy, which is Tegretol. We’re obviously not thrilled about it but
Hi everyone My 70-year-old father had FCR five years ago, with great results. We’ve just been advised he needs to start treatment again, and they’ve chosen Acalabrutinib. He has been advised he had to go off his medication for epilepsy, which is Tegretol. We’re obviously not thrilled about it but
MelaniePet
in
CLL Support
11 months ago
Update treatment
it’s been about, half a year sinc[i]e i thought i had some options for the treatment i needed[/i] [i]I posted this dilemma here, and got a lot of responce to it. My thanks for this.[/i] [i]But unfortunately, there were no options for me, and the FCR was scheduled.[/i] [i]The first time, about two
it’s been about, half a year sinc[i]e i thought i had some options for the treatment i needed[/i] [i]I posted this dilemma here, and got a lot of responce to it. My thanks for this.[/i] [i]But unfortunately, there were no options for me, and the FCR was scheduled.[/i] [i]The first time, about two
Renefaassen
in
CLL Support
1 year ago
Windermere
I had FCR in 2012 was in remission until 2018. Then started ibrutinib and still on it, how long is it likely to keep me in remission.
I had FCR in 2012 was in remission until 2018. Then started ibrutinib and still on it, how long is it likely to keep me in remission.
Windemere
in
CLL Support
1 year ago
This one is a bit "left field" but here goes...
"Can any one hear me", says the Robin? OK! Infatuation with Robins aside... After my spectacular successful knee replacement I decide to buy myself a new mountain bike. BUT... bear with me... I have been 5yrs remission since FCR, Lymphocyte count 0.7 so on prophylactic Aciclovir (against Herpes infection
"Can any one hear me", says the Robin? OK! Infatuation with Robins aside... After my spectacular successful knee replacement I decide to buy myself a new mountain bike. BUT... bear with me... I have been 5yrs remission since FCR, Lymphocyte count 0.7 so on prophylactic Aciclovir (against Herpes infection
JigFettler
Volunteer
in
CLL Support
1 year ago
It's been a long haul
I had a six month treatment with
Fludarabine
which I tolerated well and was back at work in the fall of 2000. The climb of WBC numbers started again within months and I repeated the Fludara treatment in 2003.
I had a six month treatment with
Fludarabine
which I tolerated well and was back at work in the fall of 2000. The climb of WBC numbers started again within months and I repeated the Fludara treatment in 2003.
biplane
in
CLL Support
2 years ago
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