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Second Treatment -Feeling scared
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
My husband has CLL and finished FCR in April 2019. Due to low platelets, enlarged spleen and ALC doubling he needs to start his next treatment even though he feels wellV&R is the treatment starting on 15th May. I have researched extensively including within this group, and am aware of the treatment
Sanders9
in
CLL Support
3 days ago
Reply to issues with Spleen
Hi, I agree with most of these comments on here that the enlargement of your spleen is an indication perhaps that you are ready for some form of treatment, not removal. I had chemotherapy in 2020 and my spleen was massive. After a treatment cycle of FCR for 6 months and neutropenia sepsis for 10
Hi, I agree with most of these comments on here that the enlargement of your spleen is an indication perhaps that you are ready for some form of treatment, not removal. I had chemotherapy in 2020 and my spleen was massive. After a treatment cycle of FCR for 6 months and neutropenia sepsis for 10
Roseneath69
in
CLL Support
23 days ago
Recently started Acalabrutinib
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Hi everyone, My father has recently started Acalabrutinib 5 days ago. He was diagnosed with CLL in 2007 and has received FCR (twice) and Benda-Ritux once. His CLL only went into partial remission on benda-ritux and has come back after one year since his last cycle of BR. I am worried regarding the
Healthgiddy
in
CLL Support
30 days ago
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uMRD 6
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
I have been living for the one year point on V plus O to get the clonal sequence uMRD6 bone marrow test done so I could decide if I wanted to continue with a Venetaclax. Technically, I consider myself partially treated rather than relapsed or refractory, because I only received three of the six cycles
skipro
in
CLL Support
1 month ago
Heard of the Biologic Ocreluzimab (Ocrevus) used for treating MCTD/RA?
Onwards & upwards for 2023š My daughter with MCTD was offered Ocreluzimab following a near anaphylactic reaction to the 2nd dose of the 2nd cycle of
Rituximab
in April 2021She had the 1st 2 primary infusion of Ocreluzimab in March 2022 with no ill effects & seemed to help with her joint pains & improved
Onwards & upwards for 2023š My daughter with MCTD was offered Ocreluzimab following a near anaphylactic reaction to the 2nd dose of the 2nd cycle of
Rituximab
in April 2021She had the 1st 2 primary infusion of Ocreluzimab in March 2022 with no ill effects & seemed to help with her joint pains & improved
Wangpaupau
in
NRAS
1 year ago
Rituximab
Iāve just had my 2nd infusion of
rituximab
and not had any benefits from it yet. Before my infusion I was on 15 mil but be told to come off them but as soon as I get to 10 Iām just breathless and no energy .
Iāve just had my 2nd infusion of
rituximab
and not had any benefits from it yet. Before my infusion I was on 15 mil but be told to come off them but as soon as I get to 10 Iām just breathless and no energy .
Laceygreen
in
NRAS
2 years ago
Wife getting MMR vaccine booster - isolate or not?
I'm an SLL patient, 55 years old, now about 2.5 years into remission after 6 FCR treatments. I just recovered from a recent (and thankfully mild) bout of shingles. My shingles was so mild that my GP wasn't convinced it actually was shingles! She had me tested for herpes zoster antibodies, and for good
I'm an SLL patient, 55 years old, now about 2.5 years into remission after 6 FCR treatments. I just recovered from a recent (and thankfully mild) bout of shingles. My shingles was so mild that my GP wasn't convinced it actually was shingles! She had me tested for herpes zoster antibodies, and for good
xpro3
in
CLL Support
2 months ago
Lupus & Sjogrens skin rash
On 6 monthly
Rituximab
Infusions and maintenance, steroids, 5 mg alternate days. I was with Dermatilogist last week at the time had a few spots on my shoulders she changed cream to Protopic 0.03% from Dermovate. Skin was not burning at the time just a bit itchy.
On 6 monthly
Rituximab
Infusions and maintenance, steroids, 5 mg alternate days. I was with Dermatilogist last week at the time had a few spots on my shoulders she changed cream to Protopic 0.03% from Dermovate. Skin was not burning at the time just a bit itchy.
Haired
in
LUPUS UK
1 year ago
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
2 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
2 months ago
Shingrix side effects
just wondered what peopleās 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 peopleās 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
2 months ago
āTame The Beastā ā¦.. Iām sharing for anyone whoās never seen this & am interested in your thoughts ā¦.. https://youtu.be/ikUzvSph7Z4
My 62 year old husband has Rheumatoid Arthritis - his treatment includes
Rituximab
IV infusions, DMARDS & various pain meds.
My 62 year old husband has Rheumatoid Arthritis - his treatment includes
Rituximab
IV infusions, DMARDS & various pain meds.
Turquoise-1
in
LUPUS UK
1 year ago
CLL Society interview - Dr. Shahzad Mustafa on What it Means to be Immunocompromised for Patients with CLL/SLL January 13, 2023
- How do monoclonal antibody therapies like
rituximab
and obinutuzumab affect the immune response? Anti-CD20 monoclonal antibodies like
rituximab
and obinutuzumab are commonly used therapies for treating CLL/SLL. They target the CD20 protein that is expressed on the surface of all B cells.
- How do monoclonal antibody therapies like
rituximab
and obinutuzumab affect the immune response? Anti-CD20 monoclonal antibodies like
rituximab
and obinutuzumab are commonly used therapies for treating CLL/SLL. They target the CD20 protein that is expressed on the surface of all B cells.
lankisterguy
Volunteer
in
CLL Support
1 year ago
upset stomach
Hi I have HUVS .After
rituximab
l have generally improved . This is my fourth set of
rituximab
infusions . However each time I have suffered from upset and painful stomach pains . This does not kick in until four months after treatment.
Hi I have HUVS .After
rituximab
l have generally improved . This is my fourth set of
rituximab
infusions . However each time I have suffered from upset and painful stomach pains . This does not kick in until four months after treatment.
artists
in
Vasculitis UK
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
4 months ago
Fully Funded Ibrutinib is finally coming to New Zealand!
Venetoclax +
Rituximab
is already fully funded here ""Ibrutinib to be funded in New Zealand People with chronic lymphocytic leukaemia (CLL) and certain clinical circumstances will have access to funded ibrutinib (Imbruvica) from 1 December 2022.
Venetoclax +
Rituximab
is already fully funded here ""Ibrutinib to be funded in New Zealand People with chronic lymphocytic leukaemia (CLL) and certain clinical circumstances will have access to funded ibrutinib (Imbruvica) from 1 December 2022.
morepork
in
CLL Support
1 year ago
Loxo305 trial
I looked at it but apparently there are several phases, this is the one we are looking at: BRUIN CLL-322: a Phase 3 open-label, randomized study of fixed duration pirtobrutinib (LOXO-305) plus venetoclax and
rituximab
versus venetoclax and
rituximab
in previously treated Chronic Lymphocytic Leukemia
I looked at it but apparently there are several phases, this is the one we are looking at: BRUIN CLL-322: a Phase 3 open-label, randomized study of fixed duration pirtobrutinib (LOXO-305) plus venetoclax and
rituximab
versus venetoclax and
rituximab
in previously treated Chronic Lymphocytic Leukemia
Alex830
in
CLL Support
2 years 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
5 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
5 months ago
2022 - Reflection and Thank You
As I lay on the sofa this morning recovering from my latest infusion of
Rituximab
it dawned on me how far we have all come on these voyages we are all on. In different boats and in different parts of the sea in different conditions all trying to dock in the same port.
As I lay on the sofa this morning recovering from my latest infusion of
Rituximab
it dawned on me how far we have all come on these voyages we are all on. In different boats and in different parts of the sea in different conditions all trying to dock in the same port.
Investigator1
in
Vasculitis UK
1 year ago
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