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Still neutropenic 5 months post FCR :-(
Hi all I am wondering if anyone else who has been through the FCR regime has had issues with neutropenia for such a lengthy period of time, post chemo. It's really getting me down now. I still cannot return to work, in fact I may have to resign within the next few weeks as it's now been 11 months since
Hi all I am wondering if anyone else who has been through the FCR regime has had issues with neutropenia for such a lengthy period of time, post chemo. It's really getting me down now. I still cannot return to work, in fact I may have to resign within the next few weeks as it's now been 11 months since
Sucee
in
CLL Support
6 years ago
The unspeakable bowel issues after chemo..... Do you ever get back to normal? From Beth, Nic, Del, and sue... And Maria
So in our very random chats with a number of friends on HU, we got talking about the issue of our bowels which just haven't returned to normal after chemo.. Fcr to be specific. So.. 1. Very loose..... 2. When you have to go, YOU HAVE TO GO! 3. YOU GO MORE... UP TO 5 TIMES A DAY! 4.COLOUR RANGE.
So in our very random chats with a number of friends on HU, we got talking about the issue of our bowels which just haven't returned to normal after chemo.. Fcr to be specific. So.. 1. Very loose..... 2. When you have to go, YOU HAVE TO GO! 3. YOU GO MORE... UP TO 5 TIMES A DAY! 4.COLOUR RANGE.
Bethan49
in
CLL Support
6 years ago
Rituximab and heightened histamine/allergic reaction? Or just the soya yoghurts I ate ?
I had my second of the latest duo of Rituximab infusions on Tuesday, three days ago. No reactions at the time at all and nothing to report on the one two weeks ago or indeed any of the others I've had since 2014. Just some increased upper respiratory infections from time to time. I can only think the
I had my second of the latest duo of Rituximab infusions on Tuesday, three days ago. No reactions at the time at all and nothing to report on the one two weeks ago or indeed any of the others I've had since 2014. Just some increased upper respiratory infections from time to time. I can only think the
NeonkittyUK
in
NRAS
6 years ago
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Finger fusion and tendon repair etc
Good Evening All Some of you guys know me but for brevity and basic info, I have RA/SLE/Reynauds/APS/Vasculitis/AnkySpond etc! Multiple ops, fused right foot and all toes K wired, tendons cut, toes shortened and straightened blah. I'm on biologics, Rituximab, and as soon as I get the nod from my consultant
Good Evening All Some of you guys know me but for brevity and basic info, I have RA/SLE/Reynauds/APS/Vasculitis/AnkySpond etc! Multiple ops, fused right foot and all toes K wired, tendons cut, toes shortened and straightened blah. I'm on biologics, Rituximab, and as soon as I get the nod from my consultant
Dragonfly4
in
NRAS
6 years ago
Probable discectomy☹️☹️
It looks like i am heading towards a discectomy , im ok with it as the facet joint and nerve root injections have not worked and the pain is getting worse again . My problem is i was due to have rituximab infusion on the 18th of February but ive found out it is delayed until 27th of April. Im getting
It looks like i am heading towards a discectomy , im ok with it as the facet joint and nerve root injections have not worked and the pain is getting worse again . My problem is i was due to have rituximab infusion on the 18th of February but ive found out it is delayed until 27th of April. Im getting
weathervane
in
NRAS
6 years ago
Bad day.
Have pain in hips and pelvic. Trouble being down. Getting myself dressed is laughable if it weren't real. Had rituximab infusion last week and had problems with heart rate. Second one next week. Having a flare up that my right hand is itching so much I have broken the skin and drawn blood with scratching
Have pain in hips and pelvic. Trouble being down. Getting myself dressed is laughable if it weren't real. Had rituximab infusion last week and had problems with heart rate. Second one next week. Having a flare up that my right hand is itching so much I have broken the skin and drawn blood with scratching
Ellieellie
in
NRAS
6 years ago
Hi I am new to Health Unlocked.
I am 67 yr old male. Had RA since 1992,tried lots of meds some good but stopped working.Am on Methotrexate,Folic Acid and Rituximab infusions ok at the moment. Most of my joints have mechanical damage, some replaced or fused. I lost jobs on Health & Safety grounds & had to stop work in 2010. RA
I am 67 yr old male. Had RA since 1992,tried lots of meds some good but stopped working.Am on Methotrexate,Folic Acid and Rituximab infusions ok at the moment. Most of my joints have mechanical damage, some replaced or fused. I lost jobs on Health & Safety grounds & had to stop work in 2010. RA
Backy
in
NRAS
6 years ago
FLAIR Trial allocated Ibrutinib and Rituximab any advice?
Hi just heard I have been allocated the Ibrutinib and Rituximab arm on the FLAIR trial today. I will be starting very soon. Anyone out there been on this arm of the trial or are currently on it? I would welcome any advice from anyone. Ann
Hi just heard I have been allocated the Ibrutinib and Rituximab arm on the FLAIR trial today. I will be starting very soon. Anyone out there been on this arm of the trial or are currently on it? I would welcome any advice from anyone. Ann
annmcgowan
in
CLL Support
6 years ago
POTs/ dysautonomia/ autonomic nervous system issues anyone??
Hello, looking for your experiences please and my release from hospital may depend on it!! I have been struggling with various lupus symptoms recently, had second rituximab last week and lots of palpitations/ dizziness. I was in my GPs last week standing in the queue (standing always makes me much dizzier
Hello, looking for your experiences please and my release from hospital may depend on it!! I have been struggling with various lupus symptoms recently, had second rituximab last week and lots of palpitations/ dizziness. I was in my GPs last week standing in the queue (standing always makes me much dizzier
Melba1
in
LUPUS UK
6 years ago
Introduction.
This post started off as a reply regarding links between RA and hormones, but as I have only ever dipped into this fabulous site from time to time maybe I should introduce myself and cover the point of RA and hormones. If I really wanted to link my RA or certainly auto-immune disease to a hormonal imbalance
This post started off as a reply regarding links between RA and hormones, but as I have only ever dipped into this fabulous site from time to time maybe I should introduce myself and cover the point of RA and hormones. If I really wanted to link my RA or certainly auto-immune disease to a hormonal imbalance
juneann
in
NRAS
6 years ago
Rituximab infusion
Had my first infusion of two today. I have had two previous sets. I was ok previously but today when I finished my pulse rate was high and they would not let me go home. Eventually, they sent me for an ECG. The consultant checked it and let me go home two hours after I had finished the infusion. They
Had my first infusion of two today. I have had two previous sets. I was ok previously but today when I finished my pulse rate was high and they would not let me go home. Eventually, they sent me for an ECG. The consultant checked it and let me go home two hours after I had finished the infusion. They
Ellieellie
in
NRAS
6 years ago
Time to share
This is my first actual post, so apologies for its length, but have responded to other post’s on here. I am one of those silent types you see mentioned, my wife , London girl on here finally got me to join and so glad I did. About my CLL , diagnosed back in 01/15 , FCR on flair trial 11/16 for 6 rounds
This is my first actual post, so apologies for its length, but have responded to other post’s on here. I am one of those silent types you see mentioned, my wife , London girl on here finally got me to join and so glad I did. About my CLL , diagnosed back in 01/15 , FCR on flair trial 11/16 for 6 rounds
Dell49
in
CLL Support
6 years ago
Treatment for unmutated ighv
My husband is preparing to begin FCR treatment. His WBC is 200k, all other numbers below normal. Anyone experienced this treatment who has the unmutated gene? Thank you!
My husband is preparing to begin FCR treatment. His WBC is 200k, all other numbers below normal. Anyone experienced this treatment who has the unmutated gene? Thank you!
Hidden
in
CLL America Support
6 years ago
So exhausted but don’t want to go to bed!
Anyone else? As I say I am so exhausted but track record suggests no sleep and pain so really reluctant to get to bed! Sorry to be so negative but it is a long long night with pain and no sleep. B*****r you RA! - but still hopeful Rituximab will kick in in the next few weeks - such a long journey waiting
Anyone else? As I say I am so exhausted but track record suggests no sleep and pain so really reluctant to get to bed! Sorry to be so negative but it is a long long night with pain and no sleep. B*****r you RA! - but still hopeful Rituximab will kick in in the next few weeks - such a long journey waiting
TTCC
in
NRAS
6 years ago
48 months after last FCR Treatment!
For almost four years I finished my 6th cycle of FCR. Afterwards my blood showed MRD neg. my blood counts improved rapidly after treatment and all the years my counts were excellent. My condition and health feeling was great, sometimes better than before treatment. Doing much gym and walking in fresh
For almost four years I finished my 6th cycle of FCR. Afterwards my blood showed MRD neg. my blood counts improved rapidly after treatment and all the years my counts were excellent. My condition and health feeling was great, sometimes better than before treatment. Doing much gym and walking in fresh
seoul
in
CLL Support
6 years ago
First rituximab infusion
Hi everyone not posted in a while , but have not been good at all 😢 feels like I’m ill every day 😢 actually fed up listening to myself moaning 😜 god knows how my hubby feels , have had kenalog injections into finger joints 8 in total on 1 day pain was horrific later at night , but now 2 weeks on it
Hi everyone not posted in a while , but have not been good at all 😢 feels like I’m ill every day 😢 actually fed up listening to myself moaning 😜 god knows how my hubby feels , have had kenalog injections into finger joints 8 in total on 1 day pain was horrific later at night , but now 2 weeks on it
Harrisgran1
in
LUPUS UK
6 years ago
Gone Neutropenic before Final FCR - ARGHHHH
Had my bloodwork done today in preparation for my final FCR treatments starting Monday. Drat - my neuts went to 0.4 (normal is 2.0 to 7.5) and WBC went down to 1.5 (Normal is 3.5 to 10.85). I have been postponed for at least a week. They do not see a need for injections at this time if I do not come
Had my bloodwork done today in preparation for my final FCR treatments starting Monday. Drat - my neuts went to 0.4 (normal is 2.0 to 7.5) and WBC went down to 1.5 (Normal is 3.5 to 10.85). I have been postponed for at least a week. They do not see a need for injections at this time if I do not come
Marie-54
in
CLL Support
6 years ago
Feel Terrible
Hey all, Sorry not been on here for a while, back at work full time and trying to manage all appts etc. I had my Rituximab last month and since I have slowly been declining, I am so drained, body aches, no voice, chest feeling heavy, eyes itching, sore throat, sores on my nose and mouth and the night
Hey all, Sorry not been on here for a while, back at work full time and trying to manage all appts etc. I had my Rituximab last month and since I have slowly been declining, I am so drained, body aches, no voice, chest feeling heavy, eyes itching, sore throat, sores on my nose and mouth and the night
LSurtees
in
LUPUS UK
6 years ago
Hi! Just joining.
I was diagnosed in 2001, but looking back, I had it since I was 20. I am 63, secondary progressive. My last MRI showed a new lesion. My neurologist wants to put me on Rituximab. Anyone have experience with it? Side effects?
I was diagnosed in 2001, but looking back, I had it since I was 20. I am 63, secondary progressive. My last MRI showed a new lesion. My neurologist wants to put me on Rituximab. Anyone have experience with it? Side effects?
pihokken
in
My MSAA Community
6 years ago
Bruising
Hi I have completed my first week on the Flair Trial with Ibrutinib & Rituximab. First thing that I have noticed which is different is the large bruising where my cannula was put in & where bloods were taken. Since being diagnosed in 2014 I have only ever had a slight bruise mark from regular blood
Hi I have completed my first week on the Flair Trial with Ibrutinib & Rituximab. First thing that I have noticed which is different is the large bruising where my cannula was put in & where bloods were taken. Since being diagnosed in 2014 I have only ever had a slight bruise mark from regular blood
Sanphil
in
CLL Support
6 years ago
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