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Hot feet!
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
I'm on my 4th session FCR. I consider myself lucky has I have only really suffered with terrible nausea. However, I now have started to suffer with bad leg pains and neck pains, also the soles of my heat keep going really hot????
sallyplest
in
CLL Support
7 years ago
06/28/2017 stop ibrutinib and started venetoclax
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
My husband, Bill, 55, was diagnosed CLL on Nov 2014, FCR chemotherapy 2016, failed, then Ibrutinib until 2017/06, took Venetoclax 2017/07
wwd-bill
in
CLL Support
7 years ago
Anyone else w/ CLL getting rashes? I need your feedback
I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it. I would love to get anyone's feed back since my 6 month checkup is
I'm wondering how many people with CLL is getting rashes on their shins of their legs, whether their treatment was with FCR or inbru? I've been in remission for almost 10 years now and have been battling this rash for almost all of it. I would love to get anyone's feed back since my 6 month checkup is
Loulou46
in
CLL Support
7 years ago
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Travel insurance
Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for Europe wide travel even though I am currently on iv FCR. They asked about all medications and seemed to understand CLL. It's called World First
Don't know if allowed to name firms but having spent 6 hours on web and phone I located an incredibly thorough insurer who was willing to offer insurance for Europe wide travel even though I am currently on iv FCR. They asked about all medications and seemed to understand CLL. It's called World First
abikaasa
in
CLL Support
7 years ago
This time last year my FCR journey began ... what a year! We can do it!
A year ago today I began a chemo therapy journey to treat my leaukemia; a process that I faced blind, having no idea of what to expect or what the future might hold. There were ups and downs along the way but the positives far out weigh the negatives. So many walked along side me on my journey - many
A year ago today I began a chemo therapy journey to treat my leaukemia; a process that I faced blind, having no idea of what to expect or what the future might hold. There were ups and downs along the way but the positives far out weigh the negatives. So many walked along side me on my journey - many
Bethan49
in
Leukaemia Support
7 years ago
Knee pain at night
Hi there , i have primary sjogrens with secondary joint and muscle pain . For the last couple of weeks i have had a sore knee at night , i have twinges during the day which are not so bad . It wakes me up at times as the right knee starts to throb and i cant find comfort. I dont have any swelling or
Hi there , i have primary sjogrens with secondary joint and muscle pain . For the last couple of weeks i have had a sore knee at night , i have twinges during the day which are not so bad . It wakes me up at times as the right knee starts to throb and i cant find comfort. I dont have any swelling or
weathervane
in
NRAS
7 years ago
Lymph node pain in neck
I'm about to start on Thursday my 4th round of FCR. Just these last few days a lymph node on my collarbone has been very painful, so much so that I have had to prop my head up with a cushion to take the strain. Since starting FCR my lymph nodes were back to normal size as far as I could tell so I feel
I'm about to start on Thursday my 4th round of FCR. Just these last few days a lymph node on my collarbone has been very painful, so much so that I have had to prop my head up with a cushion to take the strain. Since starting FCR my lymph nodes were back to normal size as far as I could tell so I feel
sallyplest
in
CLL Support
7 years ago
New to APS and worried
Hi all I am new to this group but have been on lupus uk for a couple of months as I was diagnosed with SLE, arthritis, alopecia, Malar rash, back in Nov 16. I am 38 and live in Leeds and work for NHS England as a legal admin manager. I have recently being diagnosed with APS and just spent 4 weeks in
Hi all I am new to this group but have been on lupus uk for a couple of months as I was diagnosed with SLE, arthritis, alopecia, Malar rash, back in Nov 16. I am 38 and live in Leeds and work for NHS England as a legal admin manager. I have recently being diagnosed with APS and just spent 4 weeks in
LSurtees
in
Hughes Syndrome APS Forum
7 years ago
Concerned or not to be concerned, that is the question....
Hey all A lot has happened over past 6 weeks, I spent 4 weeks in hospital with neurological symptoms. I have now being diagnosed with: SLE - I have had two Rituximab infusions so far Alopeca Arthritis Anti Ro - unsure what this is DNA - again not sure what this is Migraines Malay rash APS - and I
Hey all A lot has happened over past 6 weeks, I spent 4 weeks in hospital with neurological symptoms. I have now being diagnosed with: SLE - I have had two Rituximab infusions so far Alopeca Arthritis Anti Ro - unsure what this is DNA - again not sure what this is Migraines Malay rash APS - and I
LSurtees
in
LUPUS UK
7 years ago
I've just reviewed treatments and am more confused!
The range of medical opinions and videos, combined with and problems reading long posts at the moment (various reasons) are beginning to cause me some degree of anxiety, and adding to my confusion. So I'd like some straight, simple information, if possible. I'm failing to understand this completely despite
The range of medical opinions and videos, combined with and problems reading long posts at the moment (various reasons) are beginning to cause me some degree of anxiety, and adding to my confusion. So I'd like some straight, simple information, if possible. I'm failing to understand this completely despite
deveritt
in
CLL Support
7 years ago
Rheumy nurse ๐๐๐
My husband has just booked a holiday in july and i had an awful thought that I could be called in for next rituximab infusion round the same date ๐คSo i phoned the nurse and she got back to me - my appointment was the date we flew off !!!! Sooo she told me to leave it with her. The same thing happened
My husband has just booked a holiday in july and i had an awful thought that I could be called in for next rituximab infusion round the same date ๐คSo i phoned the nurse and she got back to me - my appointment was the date we flew off !!!! Sooo she told me to leave it with her. The same thing happened
weathervane
in
LUPUS UK
7 years ago
Tocilizumab 1 year on
Started infusions of Tocilizumab last May. Had been on Rituximab briefly and before that enbrel for a couple of mths. Diagnosed in March 2014 with inflammatory RA or RD to give it it more apt name. For first 3-4mths on Tocilizumab my life was transformed and I was near normal. Then september
Started infusions of Tocilizumab last May. Had been on Rituximab briefly and before that enbrel for a couple of mths. Diagnosed in March 2014 with inflammatory RA or RD to give it it more apt name. For first 3-4mths on Tocilizumab my life was transformed and I was near normal. Then september
Chezis21
in
NRAS
7 years ago
Nose Bleeds
Hey all I have been up all night and had three nose bleeds that have taken a while to stop. I am on Tinzaparin injections to thin my blood and reduce my blood clot. Anyone know if the nose bleeds are normal? I'm back in hospital tomorrow for my next Rituximab infusion, should I be concerned? Thank
Hey all I have been up all night and had three nose bleeds that have taken a while to stop. I am on Tinzaparin injections to thin my blood and reduce my blood clot. Anyone know if the nose bleeds are normal? I'm back in hospital tomorrow for my next Rituximab infusion, should I be concerned? Thank
LSurtees
in
LUPUS UK
7 years ago
Post FCR
Two months after FCR. Dr. said my numbers should grow as the weeks progress. Started therapy due to low platelets, not high WBC. My whites are .09 and platlets 47. The lowest ever. There was a mention of left shift. Don't know what's going.
Two months after FCR. Dr. said my numbers should grow as the weeks progress. Started therapy due to low platelets, not high WBC. My whites are .09 and platlets 47. The lowest ever. There was a mention of left shift. Don't know what's going.
Rprdoom
in
CLL Support
7 years ago
Finally out of hospital
Hi all Firstly, thank you for all your kind words and thoughts. I haven't been on for a while and just being discharged from hospital after 4 weeks. Prognosis is they think I may have had a mini stroke/blood clot on brain, though all my test and scans were clear they think the volume of steroids I have
Hi all Firstly, thank you for all your kind words and thoughts. I haven't been on for a while and just being discharged from hospital after 4 weeks. Prognosis is they think I may have had a mini stroke/blood clot on brain, though all my test and scans were clear they think the volume of steroids I have
LSurtees
in
LUPUS UK
7 years ago
Considering Rituximab
Hi friends - I have SLE, Reynaud's and Sjogrens. I am mid 40s and was diagnosed age 12. I spent many years in remission without meds but badly flared after stopping breastfeeding when my daughter was 12 months old. For the past 10 years I've been medicated (low dose prednisone, hydroxichloriquine, and
Hi friends - I have SLE, Reynaud's and Sjogrens. I am mid 40s and was diagnosed age 12. I spent many years in remission without meds but badly flared after stopping breastfeeding when my daughter was 12 months old. For the past 10 years I've been medicated (low dose prednisone, hydroxichloriquine, and
ShannonB
in
LUPUS UK
7 years ago
Biologics on returning to UK
I currently live in France but am thinking about returning to the UK. Can anyone direct me to a web site that gives information (NICE or other) on how it is decided on the meds you are prescribed? Are there lots of hoops to be jumped through before you are given biologics? Having been through several
I currently live in France but am thinking about returning to the UK. Can anyone direct me to a web site that gives information (NICE or other) on how it is decided on the meds you are prescribed? Are there lots of hoops to be jumped through before you are given biologics? Having been through several
KayEP
in
NRAS
7 years ago
Another week's delay
My other half started FCR 7 weeks ago, first course went without hiccup. Platelet levels initially spiked, but now steadily dropping (82 before treatment, then weekly readings of 73, 99, 103, 76, 67 and now 63). Lymphocytes way down (now 1.36 against 35.9 before treatment). Treatment now being delayed
My other half started FCR 7 weeks ago, first course went without hiccup. Platelet levels initially spiked, but now steadily dropping (82 before treatment, then weekly readings of 73, 99, 103, 76, 67 and now 63). Lymphocytes way down (now 1.36 against 35.9 before treatment). Treatment now being delayed
shoppingtrolley
in
CLL Support
7 years ago
Permanent make up
Hey everyone. Has anyone had permenent make up? I have booked myself in for microblading on my eyebrows, just dawned on me that it might not be ok with us lupies ๐ I'm on prednisilone and rituximab. I have had a tattoo years ago and that was ok. Thank you. Jo
Hey everyone. Has anyone had permenent make up? I have booked myself in for microblading on my eyebrows, just dawned on me that it might not be ok with us lupies ๐ I'm on prednisilone and rituximab. I have had a tattoo years ago and that was ok. Thank you. Jo
joannebond360
in
LUPUS UK
7 years ago
Allopurinol
Hi everyone I've just started my third session of FCR and haven't been prescribed my gout medication, Allopurinol this time. My nurse says I only take for the first two sessions. I'm sure I read some people take this all the way through and after. Unless I'm thinking of something else. Best wishes
Hi everyone I've just started my third session of FCR and haven't been prescribed my gout medication, Allopurinol this time. My nurse says I only take for the first two sessions. I'm sure I read some people take this all the way through and after. Unless I'm thinking of something else. Best wishes
sallyplest
in
CLL Support
7 years ago
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