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V + O for R/R CLL post FCR
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
I sent this to skyshark based on some info he posted but I was[u] hoping for the whole group to chime in.[/u] I had 3 rounds of FCR in 2018 stopped because of profound neutropenia. I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started
skipro
in
CLL Support
1 month ago
Rituximab questions
Hi everyone, I have been on Methotrexate, Mycophenolate Mofetil, Prednisolone and many others for the past 2 years for Vasculitis GPA. My ANCA level was down to 0 having been >177, over the past 6 months though my ANCA level is 30 and symptoms are coming back, my rheumatologist wants to try me on Rituximab
Hi everyone, I have been on Methotrexate, Mycophenolate Mofetil, Prednisolone and many others for the past 2 years for Vasculitis GPA. My ANCA level was down to 0 having been >177, over the past 6 months though my ANCA level is 30 and symptoms are coming back, my rheumatologist wants to try me on Rituximab
Wyllow
in
Vasculitis UK
1 year ago
Burning tongue and metallic taste .
I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and everything tastes metallic,but the worse is a burning tongue sensation. Does it have any connetion to CLL or Venetoclax ?Gidi
I was dx 10 years ago. Had FCR, Ibrutinib, and Venetoclax. I am on Venetoclax now for 18 months after 6 times of V+O. A year ago I lost my taste sense and everything tastes metallic,but the worse is a burning tongue sensation. Does it have any connetion to CLL or Venetoclax ?Gidi
GIDI
in
CLL Support
2 months ago
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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
2 months 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
2 months ago
Upset
Hi everyone,I haven't been on here in a bit. Things seemed to be going ok until they weren't. I had an ER visit at the end of April, and the neurologist told me to hold ocrevus for now. They weren't sure what was going, the thought was I experienced a complex migraine. I also have been having elevated
Hi everyone,I haven't been on here in a bit. Things seemed to be going ok until they weren't. I had an ER visit at the end of April, and the neurologist told me to hold ocrevus for now. They weren't sure what was going, the thought was I experienced a complex migraine. I also have been having elevated
Jhayespt
in
My MSAA Community
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
3 months 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
3 months ago
lymphocytes/neutrophils
Hello everyone, My name is Kim and I’m a 57 year old female with CLL. I was diagnosed 13 years ago and underwent aggressive chemo as a result. After 5 of 6 of fludarabine cyclophosphamide rituximab I went into semi remission and now after many hospitalizations with infection have IVIG once a month
Hello everyone, My name is Kim and I’m a 57 year old female with CLL. I was diagnosed 13 years ago and underwent aggressive chemo as a result. After 5 of 6 of fludarabine cyclophosphamide rituximab I went into semi remission and now after many hospitalizations with infection have IVIG once a month
Kimsome
in
CLL Support
10 months 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
3 months ago
POST 5 - CAR-T cell therapy
This is my latest update and not the one I expected to write. Those members following my CAR-T journey will recall my Consultant was to call me last Wednesday with an up date. I anticipated one of the following scenarios: - Bone marrow report back and a new admission date, - The bone marrow sample
This is my latest update and not the one I expected to write. Those members following my CAR-T journey will recall my Consultant was to call me last Wednesday with an up date. I anticipated one of the following scenarios: - Bone marrow report back and a new admission date, - The bone marrow sample
casanova
in
CLL Support
1 year ago
Stem cell transplant starts on Monday
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
A bit of background - In October 2021 I had a rapid and florid relapse following the end of my Ibrutinib treatment in FLAIR so I was started on Acalabrutinib with no effect and also had investigations for Richter's. Tests showed that I was resistant to the currently available BTKi's (two synergistic
Jm954
Administrator
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
4 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
4 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
4 months ago
Antineutrophilic cytoplasmic antibody (ANCA) Vasculitis
Hello everyone. I hope everyone's been hanging in there. I haven't been feeling very good lately. I have all the regular PA symptoms and the B12 has helped considerably. But there's still something that's just not right. And I've been nagging at my doctor's to please help me and finally I got an appointment
Hello everyone. I hope everyone's been hanging in there. I haven't been feeling very good lately. I have all the regular PA symptoms and the B12 has helped considerably. But there's still something that's just not right. And I've been nagging at my doctor's to please help me and finally I got an appointment
EllaNore
in
Pernicious Anaemia Society
1 year 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
4 months ago
Rituximab...
So, 6 months ago I was offered 2 infusions Abatacept or Rituximab, I went for Abatacept as the first thing they told me was the worst side effect that can happen with Rituximab. Fast forward 6 months later and I now have RA Interstitial Lung Disease and the treatment for this is Rituximab, my lung specialist
So, 6 months ago I was offered 2 infusions Abatacept or Rituximab, I went for Abatacept as the first thing they told me was the worst side effect that can happen with Rituximab. Fast forward 6 months later and I now have RA Interstitial Lung Disease and the treatment for this is Rituximab, my lung specialist
RAat13
in
NRAS
1 year ago
POST 3 - CAR-T cell therapy
Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of Rituximab and continuing with Venetoclax, 300mg daily. Apart from a reaction to the first infusion of Rituximab all has gone smoothly. In addition
Since my last post things have been ticking over with regular blood tests, Clinic appointments and my bridging treatment which consists of weekly infusions of Rituximab and continuing with Venetoclax, 300mg daily. Apart from a reaction to the first infusion of Rituximab all has gone smoothly. In addition
casanova
in
CLL Support
1 year ago
Rituximab
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Hi there, I am have just received my second dose of Rituximab after having a
Spinal stroke (T2-4)
. My specialist said the stroke was caused by a flare in my vasculitis, therefore the reason to treat with Rituximab. My question is to patients that have been treated with this medication please
Zuzu798
in
Behçet's UK
1 year ago
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