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IVIG for bone marrow suppression?
Hi everyone Is IVIG useful when you are bone marrow suppression by FCR treatment or progression of CLL? Do anyone have such experience? Miee
Hi everyone Is IVIG useful when you are bone marrow suppression by FCR treatment or progression of CLL? Do anyone have such experience? Miee
Miee
in
CLL Support
9 years ago
Rituximab infusion went smoothly but tired! What's new !
So I went in at 9 am to the day unit , got a comfy chair and they checked my urine , took my monitoring bloods then started a steroid infusion. Then got paracetamol and Piriton also to reduce risks of reactions. I was also told in my case to take all my others tablets so; leflonamide, methotrexate,
So I went in at 9 am to the day unit , got a comfy chair and they checked my urine , took my monitoring bloods then started a steroid infusion. Then got paracetamol and Piriton also to reduce risks of reactions. I was also told in my case to take all my others tablets so; leflonamide, methotrexate,
allanah
in
NRAS
9 years ago
Rituximab
I have been advised to have Rituximab infusions to help get symptoms better controlled in addition to my usual lupus meds - methotrexate and hydroxychloroquine. I am nervous about this treatment and wondered what experience others may have had with Rituximab
I have been advised to have Rituximab infusions to help get symptoms better controlled in addition to my usual lupus meds - methotrexate and hydroxychloroquine. I am nervous about this treatment and wondered what experience others may have had with Rituximab
Pickzie
in
Vasculitis UK
9 years ago
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participate in online study cll Aus
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate
Hi everyone, I'm in Sydney, Australia and recently completed an anonymous phone survey regarding listing of Ibrutinib on PBS. The survey was asking about cll patients' overall experience of the disease, diagnosis and thoughts on treatment options. You need not have had treatment already to participate
Chrisfer
in
CLL Support
9 years ago
word of warning
hi everyone its very rare i do a post and besides i have been feeling very ill recently but i wanted to share my story i have rheumatoid arthritis for a number of years and up until approx a year ago had it pretty much controlled then it came back with a venguence anyway my meds were upped and cimzia
hi everyone its very rare i do a post and besides i have been feeling very ill recently but i wanted to share my story i have rheumatoid arthritis for a number of years and up until approx a year ago had it pretty much controlled then it came back with a venguence anyway my meds were upped and cimzia
meandb
in
NRAS
9 years ago
Stupid Dr
Am in a relapse phase with my Wegeners. Had Rituximab infusion x2 Jan and Feb and am currently on pred 20 mg. Currently in hospital with acute shortness of breath. Dr s thought it was a blod clot but CT clear. Dr came around last night to tell me this but then said there's something wrong there but
Am in a relapse phase with my Wegeners. Had Rituximab infusion x2 Jan and Feb and am currently on pred 20 mg. Currently in hospital with acute shortness of breath. Dr s thought it was a blod clot but CT clear. Dr came around last night to tell me this but then said there's something wrong there but
Llinos
in
Vasculitis UK
9 years ago
As Etta James said " at last"
Well no calls over weekend as promised by Rheumy secretary so I called her 9 am again not founding as cheery as normal as I glared again. So I said I'm in radiotherapy today do call before 2 pm. 2 pm came and went and I saw the radiotherapy consultant who agreed I need more radiotherapy to my left hand
Well no calls over weekend as promised by Rheumy secretary so I called her 9 am again not founding as cheery as normal as I glared again. So I said I'm in radiotherapy today do call before 2 pm. 2 pm came and went and I saw the radiotherapy consultant who agreed I need more radiotherapy to my left hand
allanah
in
NRAS
9 years ago
FLAIR Trial - ErnieUK More Dehydration Round 5 FCR
Well can’t believe I’m now in the relaxing bit of round 5, after my difficulties at the end of round 4, and that round 6 is looming week after next. As always please correct me on any errors/omissions and please share your own experiences. After the end of round 4 and all the dehydration I really didn
Well can’t believe I’m now in the relaxing bit of round 5, after my difficulties at the end of round 4, and that round 6 is looming week after next. As always please correct me on any errors/omissions and please share your own experiences. After the end of round 4 and all the dehydration I really didn
Ernest2
in
CLL Support
9 years ago
mumsynana6
Hi all, hope the recent sunshine has eased your pain and raised your spirits ! I was diagnosed with RA in 2009. Have tried various meds with varying results -I have been on Methotrexate since diagnosis on 25mg but I am presently on 15mg Methotrexate in pen form which I inject myself { lessens the nausea
Hi all, hope the recent sunshine has eased your pain and raised your spirits ! I was diagnosed with RA in 2009. Have tried various meds with varying results -I have been on Methotrexate since diagnosis on 25mg but I am presently on 15mg Methotrexate in pen form which I inject myself { lessens the nausea
mumsynana6
in
NRAS
9 years ago
Waiting but not patiently
So been waiting over a month now. Still nothing despite numerous calls to helpline and biological nurse, regarding starting my Rituximab infusions. So had an appointment with the consultant today only yo oh and find the clinic had been cancelled and I wasn't informed grrrrrrr! So I called the main
So been waiting over a month now. Still nothing despite numerous calls to helpline and biological nurse, regarding starting my Rituximab infusions. So had an appointment with the consultant today only yo oh and find the clinic had been cancelled and I wasn't informed grrrrrrr! So I called the main
allanah
in
NRAS
9 years ago
Taste buds
Following six treatments with fcr i now seem to have lost my sence of taste and smell is this normal.
Following six treatments with fcr i now seem to have lost my sence of taste and smell is this normal.
d011y
in
CLL Support
9 years ago
Chlorambucil
Hi All, Any one having some feed back on this medicine? Is it better option than FCR? Regards
Hi All, Any one having some feed back on this medicine? Is it better option than FCR? Regards
AAli
in
CLL Support
9 years ago
Ibrutinib - 8 months on
It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions. Initially,
It's been a while since my last post so, as I am making real progress, here are my latest thoughts. To recap, Dr Schuh in Oxford put me on Ibrutinib 8 months ago as a named patient as was the process then. I am FCR refractory and 11Q deletion. I also have bi-lateral pleural effusions. Initially,
Haileybury
in
CLL Support
9 years ago
Rituximab minus MTX? Anyone on Rituximab but not taking MTX?
Just a quickie (for me!) as I lost a vital key on my keyboard and can't type an aitc*!! Grr. ;-) Laptop going in for repair next week as need it for scanning docs by email for some work I am doing. Just been for my Reumy review today .. more on review wen I can type properly again ..,. all inflammation
Just a quickie (for me!) as I lost a vital key on my keyboard and can't type an aitc*!! Grr. ;-) Laptop going in for repair next week as need it for scanning docs by email for some work I am doing. Just been for my Reumy review today .. more on review wen I can type properly again ..,. all inflammation
NeonkittyUK
in
NRAS
9 years ago
RA
Hi I have RA. Starting Rituximab. Anyone benefitted with this or had side effects?
Hi I have RA. Starting Rituximab. Anyone benefitted with this or had side effects?
Cangel
in
Arthritis Action
9 years ago
experience CLL Ibrutinib Colitis
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Hi Maybe there is a better route out of this? I am a man in the UK and was diagnosed with CLL aged 38 in 2007. I had six rounds of FCR and achieved MRD. In January 2011 ill with EBV for a year. June 2012 started FCR again. Five times. January 2013 0.0 neutrophils for eight days. May 2013 dexamethasone
Corin850
in
CLL Support
9 years ago
Mycophenolate
Hi I was diagnosed with Wegeners in November 2010 after 4 years of illness and countless visits to my GP who had no idea what was wrong with me. Thankfully, whilst staying at my daughter's and seeing her doctor, I was finally admitted to hospital after he did the right blood tests and identified I was
Hi I was diagnosed with Wegeners in November 2010 after 4 years of illness and countless visits to my GP who had no idea what was wrong with me. Thankfully, whilst staying at my daughter's and seeing her doctor, I was finally admitted to hospital after he did the right blood tests and identified I was
phayes14
in
Vasculitis UK
9 years ago
Rituximab and hair loss
I am on my second round of rituximab now to treat lupus nephritis, having had the first 2 infusions in October, I had one last week and am due for another in a week. I was wondering now if anyone experienced hair loss from this? I lost a fair amount of hair after the first set of infusions but was loosing
I am on my second round of rituximab now to treat lupus nephritis, having had the first 2 infusions in October, I had one last week and am due for another in a week. I was wondering now if anyone experienced hair loss from this? I lost a fair amount of hair after the first set of infusions but was loosing
marni04
in
LUPUS UK
9 years ago
Post Chemo Effects
Hi. Can somebody out there give me some help? I finished my chemo treatment - Bendamustine & Rituximab - in February and I'm delighted that it was successful although my white cell count is still low. But the problem I have is that for the last couple of months I have, especially in the evenings, what
Hi. Can somebody out there give me some help? I finished my chemo treatment - Bendamustine & Rituximab - in February and I'm delighted that it was successful although my white cell count is still low. But the problem I have is that for the last couple of months I have, especially in the evenings, what
jaypax
in
CLL Support
9 years ago
Starting FCR in 10 days
Hi Everyone I begin FCR on Tuesday 19th May. I've had lots of helpful advice from the hospital, such as the need to drink 2-3 litres of water a day prior to and during the treatment, but just wanted to know if anyone has any additional advice on preparing for FCR both physically and emotionally. Despite
Hi Everyone I begin FCR on Tuesday 19th May. I've had lots of helpful advice from the hospital, such as the need to drink 2-3 litres of water a day prior to and during the treatment, but just wanted to know if anyone has any additional advice on preparing for FCR both physically and emotionally. Despite
Markdce
in
CLL Support
9 years ago
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