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Acceptance. I need tips!
I've had MS for almost 15 yrs and for 12-13yrs I'd been fine. Then came 2014. I would never believe that I won't get better...saying that would be crazy talk to me. However,due to my difficulty walking lingering, I find myself crying more often because when I wake up, it lt's the same. I've just started
I've had MS for almost 15 yrs and for 12-13yrs I'd been fine. Then came 2014. I would never believe that I won't get better...saying that would be crazy talk to me. However,due to my difficulty walking lingering, I find myself crying more often because when I wake up, it lt's the same. I've just started
Kj9681
in
My MSAA Community
8 years ago
Methotrexate with rituximab
Is it essential to have to take methotrexate with rituximab infusion.
Is it essential to have to take methotrexate with rituximab infusion.
Keen62
in
NRAS
8 years ago
Constant UTI's
Does anyone else suffer from constant UTI's?. I'm sero+ RA (diagnosed 5 years ago), also I have osteopenia, sleep apnea, hypothyroidism and fibromyalgia. I take various meds including MTX 25mg via injection, I also have Rituximab infusions every 6 months. For the past 4 years I've suffered from repeated
Does anyone else suffer from constant UTI's?. I'm sero+ RA (diagnosed 5 years ago), also I have osteopenia, sleep apnea, hypothyroidism and fibromyalgia. I take various meds including MTX 25mg via injection, I also have Rituximab infusions every 6 months. For the past 4 years I've suffered from repeated
Janeellen
in
NRAS
8 years ago
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ACP 196
I'm waiting to find out if I'm IGHV mutated or not. If I am I'm less willing to undertake FCR. Does anybody know anything about the btk inhibitor ACP 196. How is it different to Ibrutinib?
I'm waiting to find out if I'm IGHV mutated or not. If I am I'm less willing to undertake FCR. Does anybody know anything about the btk inhibitor ACP 196. How is it different to Ibrutinib?
Kenn123
in
CLL Support
8 years ago
Newbie just saying hello
Hello, I was diagnosed with RRMS December 2001. Things were alright for a while with only minor symptoms. Recently however I had the FABULOUS pleasure to hear that my MS had progressed to SPMS and now am on Rituximab and praying this is something that finally helps me get at least a little relief from
Hello, I was diagnosed with RRMS December 2001. Things were alright for a while with only minor symptoms. Recently however I had the FABULOUS pleasure to hear that my MS had progressed to SPMS and now am on Rituximab and praying this is something that finally helps me get at least a little relief from
Flipsider007
in
My MSAA Community
8 years ago
FCR for IGHV unmutated
Hi, I've pulled the FCR arm in a clinical trial in UK (was hoping for Ibrutinib). I've been 5 years w and w and haven't received any treatment. Extreme fatigue and large nodes forcing me into treatment. It's only now I've started serious research into FCR and discovered difference between being mutated
Hi, I've pulled the FCR arm in a clinical trial in UK (was hoping for Ibrutinib). I've been 5 years w and w and haven't received any treatment. Extreme fatigue and large nodes forcing me into treatment. It's only now I've started serious research into FCR and discovered difference between being mutated
Kenn123
in
CLL Support
8 years ago
Simponi
Hi folks, well it's been 2 years since the RoActemra MTX taper trial started but now the inflammation markers are rising again necessitating 6 monthly preds. So I've had advice that Rituximab is the way to go. I didn't like the look of it and after much consultation we agreed the 2nd best option was
Hi folks, well it's been 2 years since the RoActemra MTX taper trial started but now the inflammation markers are rising again necessitating 6 monthly preds. So I've had advice that Rituximab is the way to go. I didn't like the look of it and after much consultation we agreed the 2nd best option was
harryhunt43
in
NRAS
8 years ago
Rituximab infusion due, but no preliminary bloodtests?
I had two Rituximab infusions back in February and am due to have another two shortly. I have found my energy and mood have improved considerably. However, I am surprised that the date for the infusion is on the same day as my check up appointment - ie that is when they will be taking bloods, but they
I had two Rituximab infusions back in February and am due to have another two shortly. I have found my energy and mood have improved considerably. However, I am surprised that the date for the infusion is on the same day as my check up appointment - ie that is when they will be taking bloods, but they
Neriah
in
LUPUS UK
8 years ago
About to start FCR
I'm about to start FCR after almost 5 years of watch and wait. Anyone been through it? Any advice?
I'm about to start FCR after almost 5 years of watch and wait. Anyone been through it? Any advice?
Kenn123
in
CLL Support
8 years ago
Rituximab
Hi all has anyone here experienced Rituximab infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't . So far I have not felt any benefit
Hi all has anyone here experienced Rituximab infusions ? I have SLE , Dermatomyositis, Sjorgren's and a string of other ailments . I had my first infusion 4 July , second one 18 July I was told at the time that I tolerated it quite well as I understand some people don't . So far I have not felt any benefit
Skid
in
LUPUS UK
8 years ago
Shingles with CLL
Hi all Has anyone had shingles post FCR. Ive had it for a week now and just finished a course of Aciclivor 800mgs 5 x a day. Spread of the rash is continuing although slower. Anyone have any idea how long this painful virus lasts and any advice for dos and donts thanks.
Hi all Has anyone had shingles post FCR. Ive had it for a week now and just finished a course of Aciclivor 800mgs 5 x a day. Spread of the rash is continuing although slower. Anyone have any idea how long this painful virus lasts and any advice for dos and donts thanks.
Mick491
in
CLL Support
8 years ago
Expert advice please!
How long after rituximab do you need to contact gp if have sore throat? I had last infusion 22nd april , i have had a couple of infections that i got sorted, i now have a sore throat again and coughing up green nastiness (not sinus) , glands also enlarged. Its four months after treatment do i still need
How long after rituximab do you need to contact gp if have sore throat? I had last infusion 22nd april , i have had a couple of infections that i got sorted, i now have a sore throat again and coughing up green nastiness (not sinus) , glands also enlarged. Its four months after treatment do i still need
weathervane
in
NRAS
8 years ago
FCR vs imbruvica first line
I was wondering what people's opinion was for FCR vs imbruvica first line for moderate risk (unmutated, +Zap70, normal FISH for me) patients. With my genetics, I should expect a average response ~5 years with FCR which is the recommended standard treatment per current guidelines. I feel
I was wondering what people's opinion was for FCR vs imbruvica first line for moderate risk (unmutated, +Zap70, normal FISH for me) patients. With my genetics, I should expect a average response ~5 years with FCR which is the recommended standard treatment per current guidelines. I feel
nkferg
in
CLL Support
8 years ago
Repeated infections on Rituximab, Metho.and steroids
Posted ten days ago about my recent problems with repeated infections, shingles X3 in 18 months, numerous chest infections, UTIs and now campylobacter ( gastroenteritis ). Well, am now on my second course of antibiotics for the campylobacter and still experiencing dreadful symptoms. Decided to see my
Posted ten days ago about my recent problems with repeated infections, shingles X3 in 18 months, numerous chest infections, UTIs and now campylobacter ( gastroenteritis ). Well, am now on my second course of antibiotics for the campylobacter and still experiencing dreadful symptoms. Decided to see my
Scorer
in
NRAS
8 years ago
Wegener's spreading its wings.
Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement
Oops, posted this in NRAS by mistake. 70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement
lfu2
in
Vasculitis UK
8 years ago
Wegener's spreading its wings.
70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement resulting in partial failure of my
70 year old male with Wegener's I was diagnosed with Cranial Ateritis in 2011 by my GP and quickly saw a consultant who changed that to Vasculitis. Over the following year or so that was changed again to Wegener's and also again to include brain (lining) involvement resulting in partial failure of my
lfu2
in
NRAS
8 years ago
Adding additional chemo
I am being treated for CLL for the second time after being in remission for 9 years...which is a blessing. I am currently taking oral Imbruvica... My most recent bone marrow biopsy showed little change after 3 months. If there is still no change in November, my Oncologist will add either .bendamustine
I am being treated for CLL for the second time after being in remission for 9 years...which is a blessing. I am currently taking oral Imbruvica... My most recent bone marrow biopsy showed little change after 3 months. If there is still no change in November, my Oncologist will add either .bendamustine
lyn26041
in
CLL Support
8 years ago
Pneumonian prevention
Hi all Over the last 7 winters i have had either full blown pneumonia or severe chest infections requiring hospitalisation. I was treated with FCR in 2010/11 and managed 5 treatments. At my last appiontment i told my consultant of my concerns for this winter and he has given me 3 months of antibiotics
Hi all Over the last 7 winters i have had either full blown pneumonia or severe chest infections requiring hospitalisation. I was treated with FCR in 2010/11 and managed 5 treatments. At my last appiontment i told my consultant of my concerns for this winter and he has given me 3 months of antibiotics
Mick491
in
CLL Support
8 years ago
Post Rituximab wipe-out
I had my first cycle of Rituximab last November. I felt I needed another around April/May, but it was postponed so that I could have my knee replacement. I also had to stop Mrthotrexate two weeks before the op. Apart from the fact that I developed Cellulitis and that the first two weeks was much more
I had my first cycle of Rituximab last November. I felt I needed another around April/May, but it was postponed so that I could have my knee replacement. I also had to stop Mrthotrexate two weeks before the op. Apart from the fact that I developed Cellulitis and that the first two weeks was much more
Jora
in
NRAS
8 years ago
6-month post FCR
I'm a little late posting this- as I had no choice but to go back to work which has been EXHAUSTING!!! My Oncologist is happy with my blood levels so he released me to go back 8/1- I'm obviously very happy that my levels are good. Unfortunately, the chemo caused other issues (according to my neurologist
I'm a little late posting this- as I had no choice but to go back to work which has been EXHAUSTING!!! My Oncologist is happy with my blood levels so he released me to go back 8/1- I'm obviously very happy that my levels are good. Unfortunately, the chemo caused other issues (according to my neurologist
rlyndecker
in
CLL Support
8 years ago
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