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Relapse/Refractory CLL
I have heart issues, although not Afib, which is why I went w/venetoclax+
rituximab
in 2019. - IgVH unmutated, CD38 neg, ZAP70 pos - although I can never keep straight what all those mean, which are good and which are bad. Thanks, Greg
I have heart issues, although not Afib, which is why I went w/venetoclax+
rituximab
in 2019. - IgVH unmutated, CD38 neg, ZAP70 pos - although I can never keep straight what all those mean, which are good and which are bad. Thanks, Greg
TeamDirtyBoots
in
CLL Support
1 year ago
Is it the time for initial treatment?
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
As I previously stated, my wife was diagnosed with CLL in 2020. Her markers are 13q deletion, 12 trisomy, and TP53, with IGHV muted. She is still in W&W form. So far, I've learned via reading literature and numerous posts about lymphocyte doubling time, lactate dehydrogenase, and lymph nodes. Her lymphocyte
Sagarcanada
in
CLL Support
15 days ago
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
17 days ago
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Progressed
If it has - has given me two options: Venetoclax +
Rituximab
OR LOXO 305 trial . Any thoughts folks? Anybody on one of these 2nd line treatments? Thanks Steve
If it has - has given me two options: Venetoclax +
Rituximab
OR LOXO 305 trial . Any thoughts folks? Anybody on one of these 2nd line treatments? Thanks Steve
steve_canada
in
CLL Support
1 year 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
1 month 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
1 month ago
Thank You All For Your Well Wishes- Happy New Year- The Best For us In 2023!
My rheumatologist put me in immediate emergency
rituximab
infusion. I gave compartment syndrome a very bad Yelp review on line- do not recommend.
My rheumatologist put me in immediate emergency
rituximab
infusion. I gave compartment syndrome a very bad Yelp review on line- do not recommend.
KellyInTexas
Administrator
in
Hughes Syndrome APS Forum
1 year ago
Rituximab or Baricitinib
I saw my RA consultant today after having a flare up in the last week, he has temporarily put me on prednisone for 4 weeks as well as my methotrexate, he has suggested I go on one of the above biological drugs but worried about side effects, can anyone advise or recommend either
I saw my RA consultant today after having a flare up in the last week, he has temporarily put me on prednisone for 4 weeks as well as my methotrexate, he has suggested I go on one of the above biological drugs but worried about side effects, can anyone advise or recommend either
taximark
in
NRAS
1 year ago
CLL Staging
Either
Rituximab
or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me as he thinks he is way off becoming unwell. He also doesn't want to worry me. I would like to know if anyone can give me an idea of what stage of CLL he has.
Either
Rituximab
or Venetoclax. My husband is always dismissive of his condition and does not want to discuss with me as he thinks he is way off becoming unwell. He also doesn't want to worry me. I would like to know if anyone can give me an idea of what stage of CLL he has.
Rocky0181
in
CLL Support
1 year ago
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
2 months ago
Update and the end of Ibrutinib
Now starting 6x
Rituximab
every 4 weeks and straight away with venetoclax , dosage 20mg 1.week 50 mg 2.week -was starting yesterday until 200mg Unfortunately today Leukocytes 1,1 Gpt/l Thrombocytes 74 Gpt/l Haemoglobin 5,1 mmol/l Neutr.Granul. 0,53 Gpt/l all well under normal so became
Now starting 6x
Rituximab
every 4 weeks and straight away with venetoclax , dosage 20mg 1.week 50 mg 2.week -was starting yesterday until 200mg Unfortunately today Leukocytes 1,1 Gpt/l Thrombocytes 74 Gpt/l Haemoglobin 5,1 mmol/l Neutr.Granul. 0,53 Gpt/l all well under normal so became
guyhighlander
in
CLL Support
1 year 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
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
3 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
3 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
3 months ago
The bumpy journey of a relapsed CLL with a weird and confusing chest CT scan
Due to my poor blood picture, it was decided that I should start treatment (
Rituximab
and venetoclax) asap and the lung situation monitored and hopefully respond to treatment as there was discussion it could be cll in the lungs.
Due to my poor blood picture, it was decided that I should start treatment (
Rituximab
and venetoclax) asap and the lung situation monitored and hopefully respond to treatment as there was discussion it could be cll in the lungs.
Bethan49
in
CLL Support
1 year ago
Rituximab
Good morning…it’s 5.00 and it appears to be Duracell bunny time after my second
Rituximab
infusion yesterday! Please can I ask you lovely people on RTX a couple of questions.
Good morning…it’s 5.00 and it appears to be Duracell bunny time after my second
Rituximab
infusion yesterday! Please can I ask you lovely people on RTX a couple of questions.
Nordywalker
in
NRAS
2 years ago
Rituximab
Im about to have my first infusion of
rituximab
. Can anyone who has been on it tell me if they've had many infections as a result? And have they cut out certain foods that are known to be risky i.e paté, soft cheeses etc?
Im about to have my first infusion of
rituximab
. Can anyone who has been on it tell me if they've had many infections as a result? And have they cut out certain foods that are known to be risky i.e paté, soft cheeses etc?
BernardBear
in
NRAS
2 years 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
Heard of the Biologic Ocreluzimab (Ocrevus) used for treating MCTD/RA?
Onwards & upwards for 2023🙏 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 2023🙏 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
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