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Hello folks,
I went for my four month check up today and found my white blood count was worse- has doubled in less than a year. Treatment therefore is needed soon. I have been offered a clinical trial, of Idelalisib (or placebo...) combined with Bendamustine and Rituximab. It seems like the way to go, but Iwould
I went for my four month check up today and found my white blood count was worse- has doubled in less than a year. Treatment therefore is needed soon. I have been offered a clinical trial, of Idelalisib (or placebo...) combined with Bendamustine and Rituximab. It seems like the way to go, but Iwould
romarin
in
CLL Support
9 years ago
Confirmation please anyone?
I was put on Humira but it failed for me sadly, my Consultant wants to put me on Rituximab but I have to go through the funding channel again along with the usual chest x-ray, blood tests and 2 DAS score reports! I would have throught as it had been approved before I wouldnt have to wait again, got
I was put on Humira but it failed for me sadly, my Consultant wants to put me on Rituximab but I have to go through the funding channel again along with the usual chest x-ray, blood tests and 2 DAS score reports! I would have throught as it had been approved before I wouldnt have to wait again, got
beckybooboo
in
NRAS
9 years ago
need some answers :)
I'm due my 2nd infusion of Rituximab on Tuesday, is it ok for me to go outdoors and mix with people? I'm going stir crazy in the house , my mother is taking me out for an hour each day, for a drive etc. I know not to go near people who are ill, coughs , colds. ( Im a nurse) I dont know what to expect
I'm due my 2nd infusion of Rituximab on Tuesday, is it ok for me to go outdoors and mix with people? I'm going stir crazy in the house , my mother is taking me out for an hour each day, for a drive etc. I know not to go near people who are ill, coughs , colds. ( Im a nurse) I dont know what to expect
Llinos
in
Vasculitis UK
9 years ago
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Is It Me Or Today's Society
Hey guys I just wanted to share with you guys that have me appointment for my first Rituximab Infusion next week. And the first thing I randomly thought was dose the Kings College Chemotherapy Day Unit have free Wifi I don’t know if that says something about me or today’s society God forbid I go a
Hey guys I just wanted to share with you guys that have me appointment for my first Rituximab Infusion next week. And the first thing I randomly thought was dose the Kings College Chemotherapy Day Unit have free Wifi I don’t know if that says something about me or today’s society God forbid I go a
wotshernameagain
in
LUPUS UK
9 years ago
chlorambucil
Hi everyone, I think that chlorambucil was mainly used for CLL treatment before FRC was formulated. Today, chlorambucil is sometimes used instead of FCR. Is this the reason why chlorambucil is not so strong drug and so good for old patients? Miee
Hi everyone, I think that chlorambucil was mainly used for CLL treatment before FRC was formulated. Today, chlorambucil is sometimes used instead of FCR. Is this the reason why chlorambucil is not so strong drug and so good for old patients? Miee
Miee
in
CLL Support
9 years ago
lung issues following fcr
Does anyone have experience with lung problems following fcr? My husband completed 6 cycles of fcr last April. Since has been ill three times with lung "infiltrates" and has had chronic cough. It is back again with a severe cough and lungs looking same as when ill earlier. We are seeing a lung specialist
Does anyone have experience with lung problems following fcr? My husband completed 6 cycles of fcr last April. Since has been ill three times with lung "infiltrates" and has had chronic cough. It is back again with a severe cough and lungs looking same as when ill earlier. We are seeing a lung specialist
dwolden
in
CLL Support
9 years ago
Treatment for ulcers
Hi I had rituximab which has not worked unfortunately. My consultant is suggesting I try aavaa which is a combination of asprin, antibiotics, flolan and someother stuff! As anyone tried this? I have tried every dressing imaginable. Using iodoflex at the moment. Keeps ulcers clean anyhow.
Hi I had rituximab which has not worked unfortunately. My consultant is suggesting I try aavaa which is a combination of asprin, antibiotics, flolan and someother stuff! As anyone tried this? I have tried every dressing imaginable. Using iodoflex at the moment. Keeps ulcers clean anyhow.
dzagotskillz
in
LUPUS UK
9 years ago
Is Bendamustine better than FCR?
Just catching up here. People may wonder if they'd be better off with Bendamustine than the old standby, FCR. Apparently not as we hear in this video from German CLL researcher Barbara Eichhorst http://www.patientpower.eu/videos/dr-barbara-eichhorst-at-ash-2014-the-international-phase-iii-cll10-study
Just catching up here. People may wonder if they'd be better off with Bendamustine than the old standby, FCR. Apparently not as we hear in this video from German CLL researcher Barbara Eichhorst http://www.patientpower.eu/videos/dr-barbara-eichhorst-at-ash-2014-the-international-phase-iii-cll10-study
andrewschorr
in
CLL Support
9 years ago
My immune system
I've been feeling so good lately physically and mentally. This past week I've been to the gym twice then to a yoga class and swam some gentle laps in the pool for a bit of aerobic excercise. Yesterday a walk on the beach with friends. After I'd been home an hour or two I started running a temperature
I've been feeling so good lately physically and mentally. This past week I've been to the gym twice then to a yoga class and swam some gentle laps in the pool for a bit of aerobic excercise. Yesterday a walk on the beach with friends. After I'd been home an hour or two I started running a temperature
Elliot43
in
CLL Support
9 years ago
To those contemplating Mabthera (rituximab) infusions
I had my first two infusions of rituximab in October and November, and by December was feeling so much better and for once Christmas was a joy instead of wiping me out with fatigue. I hadn't felt so well for years and would still be ok if I hadn't caught the lurgy after Christmas. It's still hanging
I had my first two infusions of rituximab in October and November, and by December was feeling so much better and for once Christmas was a joy instead of wiping me out with fatigue. I hadn't felt so well for years and would still be ok if I hadn't caught the lurgy after Christmas. It's still hanging
Hidden
in
NRAS
9 years ago
Anyone else had this cold/virus that will not go?
Has anyone else had this cold/virus that has lasted ages? I had two rituximab infusions in December and since then I have had a cold/fluey virus that will not go! Can't tell if the rituximab is working as I have felt so awful with this.
Has anyone else had this cold/virus that has lasted ages? I had two rituximab infusions in December and since then I have had a cold/fluey virus that will not go! Can't tell if the rituximab is working as I have felt so awful with this.
joannebond360
in
LUPUS UK
9 years ago
what are the prices of herceptin and rituximab
Hi Everyone I wonder what're the BEST current prices of Rituximab and Herceptin made by Biocon or other companies ? Hope someonte could give me suggestions , i need those urgently . Thanks and regards
Hi Everyone I wonder what're the BEST current prices of Rituximab and Herceptin made by Biocon or other companies ? Hope someonte could give me suggestions , i need those urgently . Thanks and regards
Dshannon
in
Breast Cancer India
9 years ago
Cycle 1 of BR compared to FCR, and any advice regarding Port v. PICC line please?
I had 5 cycles of FCR four years ago, and although the nausea was dreadful, I didn’t miss a day of work as I’d timed the treatment each month to start the day before my two long days of piano teaching at the local primary school. By the time my second day's teaching was ending, the nausea would kick
I had 5 cycles of FCR four years ago, and although the nausea was dreadful, I didn’t miss a day of work as I’d timed the treatment each month to start the day before my two long days of piano teaching at the local primary school. By the time my second day's teaching was ending, the nausea would kick
Ruhi9
in
CLL Support
9 years ago
Rituximab repeat infusions and B cell tests - a couple of questions for you, please.
A question or two to experienced Rituximab-ers, please. Thank you to those who replied before when I first had my duo in April. Your help was fantastic and put my mind at rest. This week is my routine review tomorrow but they did not do B Cells in October for my previous bloods review and the rheumy
A question or two to experienced Rituximab-ers, please. Thank you to those who replied before when I first had my duo in April. Your help was fantastic and put my mind at rest. This week is my routine review tomorrow but they did not do B Cells in October for my previous bloods review and the rheumy
NeonkittyUK
in
NRAS
9 years ago
Can Kidney Function fluctuate in the early stages of Lupus Nephritis treatment with Mycophenolate?
I have been taking mycophenolate sodium (very similar to MMF) for nearly 6 weeks now and am at the full dose of 360 mg bd, currently tolerating the dose fine, but have had a lot of (seemingly random) fluctuations in my kidney function ranging from normal values of more than 90ml/min eGFR to 56 ml/min
I have been taking mycophenolate sodium (very similar to MMF) for nearly 6 weeks now and am at the full dose of 360 mg bd, currently tolerating the dose fine, but have had a lot of (seemingly random) fluctuations in my kidney function ranging from normal values of more than 90ml/min eGFR to 56 ml/min
marni04
in
LUPUS UK
9 years ago
Tendon trouble.
Hello to everyone on this wonderful informative forum. I have been reading the wealth of information you post. It's so good to know that all the crazy symptoms and side effects have been experienced by others. Don't feel so alone now. My main reason for joining is to find out if anyone has had ruptures
Hello to everyone on this wonderful informative forum. I have been reading the wealth of information you post. It's so good to know that all the crazy symptoms and side effects have been experienced by others. Don't feel so alone now. My main reason for joining is to find out if anyone has had ruptures
Hidden
in
NRAS
9 years ago
Is Nplate a recommended treatment
Hello, I was diagnosed as having ITP 5 years ago and seem to have had the same treatment given to me as to all other posters. Starting with prednisolone then azathioprine, rituximab and IVIG. Platelet count has gone up and down over these years ranging from about 15 to 30, only going above this after
Hello, I was diagnosed as having ITP 5 years ago and seem to have had the same treatment given to me as to all other posters. Starting with prednisolone then azathioprine, rituximab and IVIG. Platelet count has gone up and down over these years ranging from about 15 to 30, only going above this after
Hidden
in
ITP Support Association
9 years ago
Fed up!
Rituximab ineffective! My rheumatologist confirmed my supision that Rituximab has not controlled my RA. I am rheumatoid factor positive & CCP positive & was diagnosed 13 years ago. In this time I have never been in remission. I am really struggling at minute despitate another steroid injection. My rheumatologist
Rituximab ineffective! My rheumatologist confirmed my supision that Rituximab has not controlled my RA. I am rheumatoid factor positive & CCP positive & was diagnosed 13 years ago. In this time I have never been in remission. I am really struggling at minute despitate another steroid injection. My rheumatologist
Rachel43
in
NRAS
9 years ago
FCR Round 2 Uncontrolled Sickness
As I reported in recent post about my bloods for the start of round 2, I got into problems with the anti-sickness medication for round 2, and despite trying to analyse what I did wrong in round 1 actually managed to make things worse and ended up in my local hospital to get sorted out. I've been back
As I reported in recent post about my bloods for the start of round 2, I got into problems with the anti-sickness medication for round 2, and despite trying to analyse what I did wrong in round 1 actually managed to make things worse and ended up in my local hospital to get sorted out. I've been back
Ernest2
in
CLL Support
9 years ago
Brief diary of Vasculitis UK - 2014
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with #Vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
As it is the last day of 2014 I thought I might share some of the News Items from the website for 2014. First is VUK's involvement for NICE to give the green light for Rituximab being used for patients with #Vasculitis http://www.vasculitis.org.uk/news/nice-rituximab-jan-2014 Dr Paul Brogan updated
Suzym2u
Vasculitis UK
in
Vasculitis UK
9 years ago
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