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Chronic ITP
Hello I have a 5 years old daughter who was diagnosed with ITP at 3 after coming back from a horrible experience at Olympus indoor water park. She came home and had 2 ear infections and was treated with antibiotics, a few days later the rashes came up and her platelets were 3 that's when this nightmare
Hello I have a 5 years old daughter who was diagnosed with ITP at 3 after coming back from a horrible experience at Olympus indoor water park. She came home and had 2 ear infections and was treated with antibiotics, a few days later the rashes came up and her platelets were 3 that's when this nightmare
Kifah90
in
ITP Support Association
7 years ago
Sternum tenderness and neck swelling 🙁
Hi all , i am a bit concerned by a bit of an increase in neck swelling and tenderness in sternum , particularly in the centre of chest . I have primary sjogrens which has caused lymph node enlargement, muscle and joint pain , i have had two lots of rituximab. I don't think its costochonditis as ribs
Hi all , i am a bit concerned by a bit of an increase in neck swelling and tenderness in sternum , particularly in the centre of chest . I have primary sjogrens which has caused lymph node enlargement, muscle and joint pain , i have had two lots of rituximab. I don't think its costochonditis as ribs
weathervane
in
LUPUS UK
7 years ago
Eye infection –Lupus -Rituximab
Eye infection –Lupus This weekend I was fortunate to come down with an infection that has left me looking like I barely survived a round with Floyd Mayweather. As I have found when I have a cold, flu or any kind of infection I was floored for the weekend which I expected However, my worry is that
Eye infection –Lupus This weekend I was fortunate to come down with an infection that has left me looking like I barely survived a round with Floyd Mayweather. As I have found when I have a cold, flu or any kind of infection I was floored for the weekend which I expected However, my worry is that
wotshernameagain
in
LUPUS UK
7 years ago
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Great interview with Dr. Furman of Cornell. Important discussion of new treatments verse FCR. Very positive for all of us.
Watch at: https://youtu.be/-eJhDFbEIYY Sorry if this was shown before.
Watch at: https://youtu.be/-eJhDFbEIYY Sorry if this was shown before.
Hoffy
in
CLL Support
7 years ago
High WBC and it does matter to my doctor
I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar posts, articles, & webinar material about high WBC). Then again given my experience for the past 5+ years with him when it comes to other's opinions
I think perhaps I should print out Maggie_b's post from yesterday, "High WBC but it doesn't matter" to give to my hemo/oncologist (along with other similar posts, articles, & webinar material about high WBC). Then again given my experience for the past 5+ years with him when it comes to other's opinions
gemit2000
in
CLL Support
7 years ago
Rituximab concerns
Early hours of the morning and I can't sleep. I start FLair trial Monday morning with FCR arm. Have a chest infection but taking antibiotics so will hopefully go ahead, I can't do another week of waiting!! At my recent appt. with oncologist she told me that I would start with just the chemo tablets
Early hours of the morning and I can't sleep. I start FLair trial Monday morning with FCR arm. Have a chest infection but taking antibiotics so will hopefully go ahead, I can't do another week of waiting!! At my recent appt. with oncologist she told me that I would start with just the chemo tablets
sallyplest
in
CLL Support
7 years ago
Digestion
Hi, as I have recently posted I have just finished first session/week of FCR. I find this site extremely helpful and like having a friend who you can turn to for advice. I'm abit of an ignoramus as regards medication, I take what I'm told when I'm told. I have been having lots of nausea and awful
Hi, as I have recently posted I have just finished first session/week of FCR. I find this site extremely helpful and like having a friend who you can turn to for advice. I'm abit of an ignoramus as regards medication, I take what I'm told when I'm told. I have been having lots of nausea and awful
sallyplest
in
CLL Support
7 years ago
Ibrutinib stopped - What treatment next ?
I am a 78 year old male living in the UK. Started treatment 3 years ago. Had two rounds of FCR which was stopped due to my bone marrow being wrecked. Managed to get on to Ibrutinib as a named patient via Dr Anna Schuh in Oxford. Now under the care of my local haematology consultant in Hereford. After
I am a 78 year old male living in the UK. Started treatment 3 years ago. Had two rounds of FCR which was stopped due to my bone marrow being wrecked. Managed to get on to Ibrutinib as a named patient via Dr Anna Schuh in Oxford. Now under the care of my local haematology consultant in Hereford. After
Haileybury
in
CLL Support
7 years ago
Light at the end of the tunne
Hello guys Just wanted to post a 'feel good post ' Last year I was off work with shingles which meant I couldn't take my RA drugs .This resulted in my RA running rampant in my body.I ached all over and on some days couldn't even lift a cup of tea :-( The clock was ticking work wise. Im a flight attendant
Hello guys Just wanted to post a 'feel good post ' Last year I was off work with shingles which meant I couldn't take my RA drugs .This resulted in my RA running rampant in my body.I ached all over and on some days couldn't even lift a cup of tea :-( The clock was ticking work wise. Im a flight attendant
Fifi2
in
NRAS
7 years ago
FCR, IBRUTINIB, VENETOCLAX what next...Stem Cell or CAR-T
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
Happy Easter everyone! So on this journey since Dec. 2010 and we can't seem to hit that remission "sweet spot" that we read about in the stats or trials - is it us or just the reality of how everyone's battle is unique in the world of CLL? We started V at the end of Feb. 2017 (as I posted our experience
NMMP
in
CLL Support
7 years ago
High pulse
Hi everyone. Just after a bit of advise. Does anyone have a high pulse? I have had it taken a few times recently and each time it's over 120bpm. I have an ecg tomorrow. I am on rituximab and prednisilone 7.5mg. I'm worried encase it's lupus causing it. Recently had a chest infection but a lot better
Hi everyone. Just after a bit of advise. Does anyone have a high pulse? I have had it taken a few times recently and each time it's over 120bpm. I have an ecg tomorrow. I am on rituximab and prednisilone 7.5mg. I'm worried encase it's lupus causing it. Recently had a chest infection but a lot better
joannebond360
in
LUPUS UK
7 years ago
Treatment
Hi, has anyone been given a combination of bendamustadine and rituximab as a maintenance treatment? I have read that this can prolong remission further than rituximab alone. I don't think this is available yet in UK as a standard treatment. However, I believe it may be under consideration.
Hi, has anyone been given a combination of bendamustadine and rituximab as a maintenance treatment? I have read that this can prolong remission further than rituximab alone. I don't think this is available yet in UK as a standard treatment. However, I believe it may be under consideration.
Hidden
in
Non Hodgkin's Lymphoma Friends
7 years ago
Rituximab
This drug has been suggested to me today anybody on it ? Thoughts Course I googled it 😳
This drug has been suggested to me today anybody on it ? Thoughts Course I googled it 😳
poodlegal
in
LUPUS UK
7 years ago
Try not to get too frightened!
Dear all, I'm UK-based. I had a diagnosis of MPA renal vasculitis nearly 3 years ago, admittedly, caught very early; I was treated according to the current protocol (cyclophosphamide; rituximab 2x; couple hits of high-dose steroids, then stop) followed by MMF (I don't tolerate Aza; this is next-best
Dear all, I'm UK-based. I had a diagnosis of MPA renal vasculitis nearly 3 years ago, admittedly, caught very early; I was treated according to the current protocol (cyclophosphamide; rituximab 2x; couple hits of high-dose steroids, then stop) followed by MMF (I don't tolerate Aza; this is next-best
SkinHorse
in
Vasculitis UK
7 years ago
Chronic sinusitis following FCR?
My husband was diagnosed with CLL 6 years ago, Trisomy 12, a middle of the road but not common form. A year later he had FCR with great results but the remission lasted only 3 1/2 years. For the last year and a half he has had chronic sinusitis and for the last several months it has been serious. He
My husband was diagnosed with CLL 6 years ago, Trisomy 12, a middle of the road but not common form. A year later he had FCR with great results but the remission lasted only 3 1/2 years. For the last year and a half he has had chronic sinusitis and for the last several months it has been serious. He
Jls123
in
CLL Support
7 years ago
Side effects ???
HI I am in maintenance rituximab treatments every eight weeks until November or December of 2017 ( 24 months total). I was diagnosed with Follicular Lymphoma March of 2015 ( I think it was March anyway.) I have been in remission since November of 2015. YEAH !! Does anyone using the Rituximab have side
HI I am in maintenance rituximab treatments every eight weeks until November or December of 2017 ( 24 months total). I was diagnosed with Follicular Lymphoma March of 2015 ( I think it was March anyway.) I have been in remission since November of 2015. YEAH !! Does anyone using the Rituximab have side
Melodyj
in
Non Hodgkin's Lymphoma Friends
7 years ago
FCR and Bladder irritation
Hello All, I just thought I would pose a quick question to ask if these symptoms I have are common place or unrelated to FCR. I have just finished my 6th (and last) cycle of FCR just over a week ago. This last weekend I have started to need to go to toilet (pee) more often. I feel as
Hello All, I just thought I would pose a quick question to ask if these symptoms I have are common place or unrelated to FCR. I have just finished my 6th (and last) cycle of FCR just over a week ago. This last weekend I have started to need to go to toilet (pee) more often. I feel as
Rich316
in
CLL Support
7 years ago
Update on ... ongoing pain following injection. 71 year old male with Wegener's
Consultation was positive. Attention was spotlighted upon the upcoming operation for bronchial stent/dilation. If another infection occurs in the meantime I will be admitted to hospital but the procedure will be carried out anyway.... it will not be put off. On the medication side it is possible I will
Consultation was positive. Attention was spotlighted upon the upcoming operation for bronchial stent/dilation. If another infection occurs in the meantime I will be admitted to hospital but the procedure will be carried out anyway.... it will not be put off. On the medication side it is possible I will
lfu2
in
Vasculitis UK
7 years ago
Back to work on Monday - Whaaaah!
Hi Folks, well the time is nigh. Back to work on Monday and my wet room is nearly finished now that I have micro-managed the tradesmen. Stresssy! I've been painting like a whirling dervish and have got myself a head cold which will hopefully disappear over the weekend. I feel like I could do with another
Hi Folks, well the time is nigh. Back to work on Monday and my wet room is nearly finished now that I have micro-managed the tradesmen. Stresssy! I've been painting like a whirling dervish and have got myself a head cold which will hopefully disappear over the weekend. I feel like I could do with another
Hidden
in
Non Hodgkin's Lymphoma Friends
7 years ago
FCR lite for relapsed SLL
After having CR for 5 years, oncologist decided to start treatment in next few days. Primary driver is node size and weight loss. My 1st line of treatment was 6 cycles of FCR. Ibrunitib is available but it's very expensive. Probably this medicine will be in reach for common man in 2-3 years time. Finally
After having CR for 5 years, oncologist decided to start treatment in next few days. Primary driver is node size and weight loss. My 1st line of treatment was 6 cycles of FCR. Ibrunitib is available but it's very expensive. Probably this medicine will be in reach for common man in 2-3 years time. Finally
mag1309
in
CLL Support
7 years ago
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