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Post FCR - stopping Aciclovir
I finished FCR just over 3 months ago. I actually only had 5 sessions as I had responded so well. For the first 6 weeks or so, I was on cloud nine, but then all my muscles started aching. I felt like an old woman when getting out of bed in the morning, or getting up from a chair. My GP said lots
I finished FCR just over 3 months ago. I actually only had 5 sessions as I had responded so well. For the first 6 weeks or so, I was on cloud nine, but then all my muscles started aching. I felt like an old woman when getting out of bed in the morning, or getting up from a chair. My GP said lots
Grannajan
in
CLL Support
7 years ago
Feeling worse after FCR treatment.
Anyone here had FCR treatment? I have post chemo questions. I have a question...post-chemo question. Did you feel mentally different? Some days I feel so down and so blah, it's hard to explain. I don't feel like myself. Like I strain to smile and put so much energy into smiling and it feels fake but
Anyone here had FCR treatment? I have post chemo questions. I have a question...post-chemo question. Did you feel mentally different? Some days I feel so down and so blah, it's hard to explain. I don't feel like myself. Like I strain to smile and put so much energy into smiling and it feels fake but
sunflwerchild
in
CLL Support
7 years ago
N plate
Hi everyone, Just a quick one (i hope!!) how long have people been having N plate injections? My situation is that after ITP showing its head again in September, I've been having N plate injections to control the level (had rituximab but failed after 3 years, and cant do steroids as body goes into melt
Hi everyone, Just a quick one (i hope!!) how long have people been having N plate injections? My situation is that after ITP showing its head again in September, I've been having N plate injections to control the level (had rituximab but failed after 3 years, and cant do steroids as body goes into melt
Ironspur14
in
ITP Support Association
7 years ago
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Rituximab and possible side effects
I am due to start my first rituximab infusions soon (four over four weeks) and although not great timing have the opportunity to start a job working at home around the same time. I have been not able to work for some time and am really considering the job because of my financial situation rather than
I am due to start my first rituximab infusions soon (four over four weeks) and although not great timing have the opportunity to start a job working at home around the same time. I have been not able to work for some time and am really considering the job because of my financial situation rather than
Galaxy2
in
LUPUS UK
7 years ago
Starting yet another Biologic
Hi everybody, not posted for sometime now but just wondered if anyone is on Tocilizumab. My rheumy has suggested I go onto this biologic now (number 4), as Rituximab has not worked as it should. Would really appreciate any comments, good or bad. Many thanks 😊
Hi everybody, not posted for sometime now but just wondered if anyone is on Tocilizumab. My rheumy has suggested I go onto this biologic now (number 4), as Rituximab has not worked as it should. Would really appreciate any comments, good or bad. Many thanks 😊
Luthien
in
NRAS
7 years ago
The start for me on FCR.
Hi all. Though its about time I posted and said hi after following this wonderful resource for so long. WBC at high 80s, and slow growing lymph nodes but plummeting platelets, crushing fatigue and night sweats. So here I am sitting on a bed having my first cycle of rituximab ( FCR ) . Wish me luck and
Hi all. Though its about time I posted and said hi after following this wonderful resource for so long. WBC at high 80s, and slow growing lymph nodes but plummeting platelets, crushing fatigue and night sweats. So here I am sitting on a bed having my first cycle of rituximab ( FCR ) . Wish me luck and
sandydog
in
CLL Support
7 years ago
Morning sickness .......
Hi all, I have Rheumatoid Vasculitis and am on sulfasalazine, prednisolone, hydroxychloroquine, gabapentin and rituximab infusions. I am still able to work but it takes me a good hour to get ready in the morning due to the aches and pains. I also suffer from vomiting first thing in the morning, which
Hi all, I have Rheumatoid Vasculitis and am on sulfasalazine, prednisolone, hydroxychloroquine, gabapentin and rituximab infusions. I am still able to work but it takes me a good hour to get ready in the morning due to the aches and pains. I also suffer from vomiting first thing in the morning, which
CHARLIE49
in
Vasculitis UK
7 years ago
Onwards and upwards
Hi Folks, Having finished 8 cycles of R-CVP on 16 Dec 2016, I am now in 'good partial remission'. I am satisfied with this outcome. I started my first injection of Rituximab in early February. My skin has been very dry and this injection seemed to exacerbate it but it has now gone back to normal. I have
Hi Folks, Having finished 8 cycles of R-CVP on 16 Dec 2016, I am now in 'good partial remission'. I am satisfied with this outcome. I started my first injection of Rituximab in early February. My skin has been very dry and this injection seemed to exacerbate it but it has now gone back to normal. I have
Hidden
in
Non Hodgkin's Lymphoma Friends
7 years ago
Trouble weaning off steroids
Hi, I have been diagnosed with SLE 7 years ago but had a really bad time with it for the last 2 - 3 years. I have been on prednisolone fluctuating between 10 - 40mg a day for about 2 years due to bad flare ups causing major fatigue, high fevers, joint pain, unbearable cramps on shoulders and neck, headaches
Hi, I have been diagnosed with SLE 7 years ago but had a really bad time with it for the last 2 - 3 years. I have been on prednisolone fluctuating between 10 - 40mg a day for about 2 years due to bad flare ups causing major fatigue, high fevers, joint pain, unbearable cramps on shoulders and neck, headaches
LydiaG
in
LUPUS UK
7 years ago
At last!
Hello all. It's been six weeks since my second infusion of Rituximab. I have now managed to stop taking painkillers as of the middle of last week. Seem to be improving daily. I still have aches, stiffness and tiredness but there are the odd moments when I forget I have it and do something like getting
Hello all. It's been six weeks since my second infusion of Rituximab. I have now managed to stop taking painkillers as of the middle of last week. Seem to be improving daily. I still have aches, stiffness and tiredness but there are the odd moments when I forget I have it and do something like getting
Ellieellie
in
NRAS
7 years ago
Diagnosed with Panca Vasculitis, Rhumatoid, and Osteoarthritis
I'm sorta new at this, I was diagnosed with polymyositis in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for any amount of time. The Rhumatoligist wanted me to take chemotherapy treatments but I couldn't bring myself to do them at that time. So I tried
I'm sorta new at this, I was diagnosed with polymyositis in 2014. I couldn't use my hands or stand up straight. It hurt to walk, sit stand, or even to lay for any amount of time. The Rhumatoligist wanted me to take chemotherapy treatments but I couldn't bring myself to do them at that time. So I tried
deebeau
in
Vasculitis UK
7 years ago
Worried about the numbers about to start FCR
Hello, After optimistically signing up to the FLAIR trial last week, we got the call yesterday to say Mum had been randomised to receive FCR which was a little disappointing. We were told that they are still awaiting all results, but her CLL infiltration was very high at 75%. I am now worried sick that
Hello, After optimistically signing up to the FLAIR trial last week, we got the call yesterday to say Mum had been randomised to receive FCR which was a little disappointing. We were told that they are still awaiting all results, but her CLL infiltration was very high at 75%. I am now worried sick that
Pinkvixon
in
CLL Support
7 years ago
First Online Electronic Blood Test Results on Patients Know Best
Just writing to say I've just accessed my first set of blood test results electronically via the online system provided by organisation "Patients Know Best: https://www.patientsknowbest.com/ I think this has been rolled out to a number of Health authorities, I'm with OUH. Please reply if you are also
Just writing to say I've just accessed my first set of blood test results electronically via the online system provided by organisation "Patients Know Best: https://www.patientsknowbest.com/ I think this has been rolled out to a number of Health authorities, I'm with OUH. Please reply if you are also
Ernest2
in
CLL Support
7 years ago
FCR selected
I've been randomly selected for Flair trial with FCR starting 11/4. I have to have chemo orally first of all as my white count is high and needs to be below 100 before I can have intravenously. I feel disappointed but not sure why. I think it's because my consultant and nurses have spoken since treatment
I've been randomly selected for Flair trial with FCR starting 11/4. I have to have chemo orally first of all as my white count is high and needs to be below 100 before I can have intravenously. I feel disappointed but not sure why. I think it's because my consultant and nurses have spoken since treatment
sallyplest
in
CLL Support
7 years ago
Hair loss
I have appointment today to find out which arm I will be on for FLAIR trial and I'm afraid a fit of vanity has gripped me. I wondered can anyone give me any details regarding hair loss with FCR or Ibrutinin/Rituxamab.
I have appointment today to find out which arm I will be on for FLAIR trial and I'm afraid a fit of vanity has gripped me. I wondered can anyone give me any details regarding hair loss with FCR or Ibrutinin/Rituxamab.
sallyplest
in
CLL Support
7 years ago
Doxycycline
Hi everyone. I am on rituximab and having various frequent infections because of it, this one being a chest infection. I was out on amoxicillin but after a few days after it getting worse changed the antibiotics to doxycycline, I have just read that it can flare lupus, has anyone experienced this or
Hi everyone. I am on rituximab and having various frequent infections because of it, this one being a chest infection. I was out on amoxicillin but after a few days after it getting worse changed the antibiotics to doxycycline, I have just read that it can flare lupus, has anyone experienced this or
joannebond360
in
LUPUS UK
7 years ago
Need for irradiated transfusions following FCR
Hi everyone, just been given irradiated transfusion owing to aenemia. Was told that because I had fluradabin years ago that this is the procedure. Does FCR contain fluradabin.?
Hi everyone, just been given irradiated transfusion owing to aenemia. Was told that because I had fluradabin years ago that this is the procedure. Does FCR contain fluradabin.?
Broadbent
in
CLL Support
7 years ago
New to the group (not at all new to CLL!). Thought I'd say hello...
Hi everybody! I was diagnosed a few days after my 34th birthday in December 2002, although the first signs of the disease appeared some years earlier when I was thirty. I got a wart on my finger, which was unusual as I'd already had them as a child and my immune system had dealt with them back then (
Hi everybody! I was diagnosed a few days after my 34th birthday in December 2002, although the first signs of the disease appeared some years earlier when I was thirty. I got a wart on my finger, which was unusual as I'd already had them as a child and my immune system had dealt with them back then (
Hidden
in
CLL Support
7 years ago
Rituximab infusion on Monday
Hi, I come on here from time to time...I have got a rare diagnosis of IgG4 systemic disease. I've got ckd stage 3b&am 38. I also have pancreatitis, and get bad asthma,along with diabetes due to the pancreatitis. Anyhow, on Monday I am having my first Rituximab infusion. ..it's a biologic drug. They
Hi, I come on here from time to time...I have got a rare diagnosis of IgG4 systemic disease. I've got ckd stage 3b&am 38. I also have pancreatitis, and get bad asthma,along with diabetes due to the pancreatitis. Anyhow, on Monday I am having my first Rituximab infusion. ..it's a biologic drug. They
madonbrew
in
Early CKD Support
7 years ago
2nd episode of ITP - Question about speed of onset.
Hi - I have had 2 episodes of ITP (about 6 months apart). My current platelet count is a little over 200, initially it was 1 and then had prednisone, platelets, IVG and then a 4 week course of Rituximab administered. It seemed like during this 2nd episode I noticed blue spots on my body in the morning
Hi - I have had 2 episodes of ITP (about 6 months apart). My current platelet count is a little over 200, initially it was 1 and then had prednisone, platelets, IVG and then a 4 week course of Rituximab administered. It seemed like during this 2nd episode I noticed blue spots on my body in the morning
garyjacksteer
in
ITP Support Association
7 years ago
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