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So much pain.....
I'm fairly new to this site and very much appreciate all help and advice that is so generously given I went to a party last night and drank a lot more than I should. I've been doing so well, one year on from a rituximab infusion, but today I can barely move - toes, ankles, knees, hips, fingers, wrists
I'm fairly new to this site and very much appreciate all help and advice that is so generously given I went to a party last night and drank a lot more than I should. I've been doing so well, one year on from a rituximab infusion, but today I can barely move - toes, ankles, knees, hips, fingers, wrists
Thereseh
in
NRAS
7 years ago
Urgent question: low platelets
My husband Murray is in a very precarious state right now and I would sure appreciate your input. Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on ibrutinib for 9 months, scheduled for stem cell
My husband Murray is in a very precarious state right now and I would sure appreciate your input. Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on ibrutinib for 9 months, scheduled for stem cell
Glees
in
CLL Support
7 years ago
Husband with CLL in Rituximab Therapy
Hello my name is Aylin. I'm new in the group. We live in Turkey so please forgive me when I make errors in my English :) My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level
Hello my name is Aylin. I'm new in the group. We live in Turkey so please forgive me when I make errors in my English :) My husband was diagnosed in 2012 with CLL at the age of 48. He didn't need a treatment until 2015. He had a FCR tratment when his white cells were very high and the platelet level
aylinozel
in
CLL Support
7 years ago
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Can anyone with SLE do intense exercise?
My son Fin, diagnosed and hospitalised in September with severe lupus nephritis is attempting to get to the fitness level he was at before he became ill. He was training in his bone 6days a week and racing national and internationally. Is there any reason why he CAN'T get back to form?? He feels better
My son Fin, diagnosed and hospitalised in September with severe lupus nephritis is attempting to get to the fitness level he was at before he became ill. He was training in his bone 6days a week and racing national and internationally. Is there any reason why he CAN'T get back to form?? He feels better
Deegraham
in
LUPUS UK
7 years ago
Having rituximab
I got a letter from Dr Clarke at Southmead saying that my visit to Addenbrookes came to the conclusion that, after a PET scan, I will now have this drug Can anyone tell me what to expect please as in how long it takes and possible side effects ? I’m a bit worried but this disease is bad & I just want
I got a letter from Dr Clarke at Southmead saying that my visit to Addenbrookes came to the conclusion that, after a PET scan, I will now have this drug Can anyone tell me what to expect please as in how long it takes and possible side effects ? I’m a bit worried but this disease is bad & I just want
Balderick
in
Vasculitis UK
7 years ago
ANA used to be 1:1320 but is now negative. Thoughts?
Hi. I'm new here. Hope that explains the slightly long intro :). In 2014, my ANA was ~1:1320. I was diagnosed with ITP and SLE; I was in the ER 3 times and was found on at least four occasions to have severely low platelets (2-6 range). I was initially treated with prednisone, and, since it proved to
Hi. I'm new here. Hope that explains the slightly long intro :). In 2014, my ANA was ~1:1320. I was diagnosed with ITP and SLE; I was in the ER 3 times and was found on at least four occasions to have severely low platelets (2-6 range). I was initially treated with prednisone, and, since it proved to
Newla
in
LUPUS UK
7 years ago
burning sensation on my scalp
I am Anja (61) from the Netherlands. I have had CLL since 2010. FCR in 2012. I am participating in the ACP 196 study since March this year. Then I started Ibrutinib. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains
I am Anja (61) from the Netherlands. I have had CLL since 2010. FCR in 2012. I am participating in the ACP 196 study since March this year. Then I started Ibrutinib. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains
jroon08
in
CLL Support
7 years ago
Dr. Furman on the Diminishing Role of FCR
Hi, As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that
Hi, As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that
bkoffman
CLL CURE Hero
in
CLL Support
7 years ago
Update on wbc
Just a wee update on wbc , its up again for now . The rheumy Nurse spoke to the consultant and she has advised me to stay off the plaquenil for now although it doesn’t usually cause the wbc to drop . I have to get bloods done again in two weekand then monthly . Im happy enough with this as not as fatigued
Just a wee update on wbc , its up again for now . The rheumy Nurse spoke to the consultant and she has advised me to stay off the plaquenil for now although it doesn’t usually cause the wbc to drop . I have to get bloods done again in two weekand then monthly . Im happy enough with this as not as fatigued
weathervane
in
LUPUS UK
7 years ago
Stress and anxiety
Hi, this is my first post even though I have had lupus 17 years. In the last year I get really stressed out by hospital appointments. I get so anxious I can't sleep and I'm just in pain from head to toe. I have hospital appointment on Thursday for my first rituximab infusion. I have been looking forward
Hi, this is my first post even though I have had lupus 17 years. In the last year I get really stressed out by hospital appointments. I get so anxious I can't sleep and I'm just in pain from head to toe. I have hospital appointment on Thursday for my first rituximab infusion. I have been looking forward
Maverick77
in
LUPUS UK
7 years ago
Round 2 FCR complete
I have completed round 2 of FCR and am past the lowest point (10 days post) so am starting to recover. The infusion days themselves were easy. I have a port so it is a simple hook up and away they go. No reactions day one and two, but by end of day 3 I was starting to feel some nausea. I take Ondansetron
I have completed round 2 of FCR and am past the lowest point (10 days post) so am starting to recover. The infusion days themselves were easy. I have a port so it is a simple hook up and away they go. No reactions day one and two, but by end of day 3 I was starting to feel some nausea. I take Ondansetron
Marie-54
in
CLL Support
7 years ago
Jules is back and my plans for 2018 are
Hi Everyone Some of you know I do the odd Cycle ride for Charity, CLLSA and Bloodwise. To the unfortunate new members to this site allow me to introduce myself. I'm Jules AKA as The Flyer I have been on Watch and Wait for nearly 8 years now and decided I would try and help raise some funds - so far
Hi Everyone Some of you know I do the odd Cycle ride for Charity, CLLSA and Bloodwise. To the unfortunate new members to this site allow me to introduce myself. I'm Jules AKA as The Flyer I have been on Watch and Wait for nearly 8 years now and decided I would try and help raise some funds - so far
TheFlyer
in
CLL Support
7 years ago
Road to a BMT... oops just got there
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
Hello Health Unlocked community, Since this forum and community offered me a great amount of support and kindness during our last crisis I thought I would come back to it. Last time you heard from me/us was when my husband Mark began failing on Ibrutinib in Feb. 2017 and he was going to start Venetoclax
NMMP
in
CLL Support
7 years ago
Rejection of claim for daycare rituximab cancer treatment by United India Insurance Co
I had stage IV mantle cell Non hodgkins lymphoma. Got chemotherapy treatment at mumbai . Now under full remission but i am taking rituximab inj in day care every 2 months.All my earlier chemo costs were paid by United India Insurance under their gold policy. I am 61 yrs old male. I have coverage of 6.5
I had stage IV mantle cell Non hodgkins lymphoma. Got chemotherapy treatment at mumbai . Now under full remission but i am taking rituximab inj in day care every 2 months.All my earlier chemo costs were paid by United India Insurance under their gold policy. I am 61 yrs old male. I have coverage of 6.5
munjalbom8
in
Breast Cancer India
7 years ago
Change of diagnosis
I noticed on my latest consultant's report that my diagnosis has changed from GCA to systemic vasculitis. Can someone explain what systemic actually means please? My symptoms changed from the side headaches (2009 to 2014) to nose and throat problems, loss of hearing-steroid responsive (2014 to now).
I noticed on my latest consultant's report that my diagnosis has changed from GCA to systemic vasculitis. Can someone explain what systemic actually means please? My symptoms changed from the side headaches (2009 to 2014) to nose and throat problems, loss of hearing-steroid responsive (2014 to now).
maisie5
in
Vasculitis UK
7 years ago
immunoglobulin replacement therapy
I have an immunology appointment on Monday with a view to me starting immunoglobulin replacement treatment as I keep getting chest and sinus infections. My low immunoglobulin levels are caused by rituximab. Has anyone had this treatment? did it work? are there any questions I should be asking the doctor
I have an immunology appointment on Monday with a view to me starting immunoglobulin replacement treatment as I keep getting chest and sinus infections. My low immunoglobulin levels are caused by rituximab. Has anyone had this treatment? did it work? are there any questions I should be asking the doctor
Mooka
in
Vasculitis UK
7 years ago
FCR Cycle one
Had cycle 1 FCR - was a little rough but come time for 2nd cycle my BW is normal why continue
Had cycle 1 FCR - was a little rough but come time for 2nd cycle my BW is normal why continue
Mathild
in
CLL Support
7 years ago
Antibiotics and rituximab
I have GPA or wegeners granulomatosis. Just started on Rituximab 3 days ago and am due for my second treatment in two weeks. I have a UTI and have just started antibiotics for 7 days. Will this defer my next rituximab or will it be ok to have?
I have GPA or wegeners granulomatosis. Just started on Rituximab 3 days ago and am due for my second treatment in two weeks. I have a UTI and have just started antibiotics for 7 days. Will this defer my next rituximab or will it be ok to have?
gpaman
in
NRAS
7 years ago
Rituximab for skin condition -- plus caretaker needs mental health check
My husband has been told he may need to start rituximab to combat the immune-related skin lesions he's had for the past two months. Prednisone (now at 60 mg/daily--skin clears up but then as soon as he gets down to 20 mg or so, lesions return), valacyclovir, and various other medications have not been
My husband has been told he may need to start rituximab to combat the immune-related skin lesions he's had for the past two months. Prednisone (now at 60 mg/daily--skin clears up but then as soon as he gets down to 20 mg or so, lesions return), valacyclovir, and various other medications have not been
Akapiratequeen
in
CLL Support
7 years ago
FCR + Ibrutinib trial
This is a wonderful community and I thank everyone who responded to my previos post with an opinion or just a message of support. I have the opportunity to participate in a trial that combines ibrutinib with FCR for 6 months and after that ends i would continue to take the ibrutinib for 2 years. I’
This is a wonderful community and I thank everyone who responded to my previos post with an opinion or just a message of support. I have the opportunity to participate in a trial that combines ibrutinib with FCR for 6 months and after that ends i would continue to take the ibrutinib for 2 years. I’
Haesl
in
CLL Support
7 years ago
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