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Immune system during fcr
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
nugg9
in
CLL Support
6 years ago
Rituximab / Mabthera
Just asking a question on behalf of my Mum, yes she has RA as well. She's not been able to have her second infusion on Rituximab / Mabthera, due to a urinary infection. Its now been 3 weeks since her first infusion. Is there a limit to how long the second infusion can be delayed, she's a bit fed up at
Just asking a question on behalf of my Mum, yes she has RA as well. She's not been able to have her second infusion on Rituximab / Mabthera, due to a urinary infection. Its now been 3 weeks since her first infusion. Is there a limit to how long the second infusion can be delayed, she's a bit fed up at
philfen
in
NRAS
6 years ago
I needed my pain meds
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Kimsome
in
Pain Concern
6 years ago
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Rituximab and belimibub
I have pretty horrid Sjorgrens and they think they're some lupus in there too. I have been on hydroxy 400 for some time now with steroids here and there, but rheumy recently said I should reduce to 200 for a while (can't remember why). She also said that I should think about methatroxate, Alizi....or
I have pretty horrid Sjorgrens and they think they're some lupus in there too. I have been on hydroxy 400 for some time now with steroids here and there, but rheumy recently said I should reduce to 200 for a while (can't remember why). She also said that I should think about methatroxate, Alizi....or
puffyface
in
LUPUS UK
6 years ago
Imbrevica rash
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Art2018
in
CLL Support
6 years ago
Info needed
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
dandelup
in
CLL Support
6 years ago
CLLSA and Leukaemia Care Joint Response to NHS England regarding Ibrutinib Prescribing as per NICE TA
This is the letter sent to Professor Peter Clarke on 2nd July 2018 for the review of Ibrutinib prescribing.
Professor Peter Clark
Chair NHS England Chemotherapy Clinical Reference Group and Clinical Lead for the Cancer Drugs Fund, Specialised Commissioning NHS England
CLLSA and Leukaemia
This is the letter sent to Professor Peter Clarke on 2nd July 2018 for the review of Ibrutinib prescribing.
Professor Peter Clark
Chair NHS England Chemotherapy Clinical Reference Group and Clinical Lead for the Cancer Drugs Fund, Specialised Commissioning NHS England
CLLSA and Leukaemia
Jm954
Administrator
in
CLL Support
6 years ago
Heart racing after infusion for Wegeners
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
I had my 4th infusion of Rituximab last week for Wegeners granulomatosis and earlier today felt pressure in my ears, like when you go up in an aircraft but also I felt dizzy and very faint. I’ve taken double my propranolol but nothing is slowing it down. Should I phone 101 or 999 ? Could this be Rituximab
Balderick
in
Vasculitis UK
6 years ago
Rituximab infusion
Hi everyone, just wondering if it's normal to have dizziness after the rituximab infusions ? I was fine first time round last year but this second lot has knocked me for six, the first bout I just had really bad flushing that cleared the next day but this second lot I got alot less of the flushed face
Hi everyone, just wondering if it's normal to have dizziness after the rituximab infusions ? I was fine first time round last year but this second lot has knocked me for six, the first bout I just had really bad flushing that cleared the next day but this second lot I got alot less of the flushed face
285641
in
NRAS
6 years ago
Blood test prior to Rituximab.
Hi all, I am due my Ritiuximab on a Wednesday for Rheumatoid Arthritis and I have been told to have bloods 2 - 3 days before. I am sure that I have had blood a week before in the past and when I enquired at the hospital, one person thought even two weeks would be fine yet someone else said, "No protocol
Hi all, I am due my Ritiuximab on a Wednesday for Rheumatoid Arthritis and I have been told to have bloods 2 - 3 days before. I am sure that I have had blood a week before in the past and when I enquired at the hospital, one person thought even two weeks would be fine yet someone else said, "No protocol
juneann
in
NRAS
6 years ago
Coughing that seems never ending!
Hi everyone I will apologise now because this is a very long post. I have had 3 chest infections since January with a really bad cough. The kind of cough that starts with a tickle in the throat and then you just cannot stop. I cough so much I am nearly sick. On the first two occasions I felt really
Hi everyone I will apologise now because this is a very long post. I have had 3 chest infections since January with a really bad cough. The kind of cough that starts with a tickle in the throat and then you just cannot stop. I cough so much I am nearly sick. On the first two occasions I felt really
Bakbre
in
LUPUS UK
6 years ago
Ibrutiniv or.....
Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks. WBC are in 130.000 ( always growing and more than doubling in the last 6 months ) and some lymnph nodes are close to bladder and maybe an urethra . All
Hello everybody . i have no 17p / 11q or 13 q deletions , but i am igVH unmutated , waiting for results on mutation of gen p53 in about two weeks. WBC are in 130.000 ( always growing and more than doubling in the last 6 months ) and some lymnph nodes are close to bladder and maybe an urethra . All
antonb
in
CLL Support
6 years ago
Vitamin D deficiency?
I had a hospital appointment last week, only 2 months since rituximab infusion and my hands are so painful. The nurse gave me a steroid injection, which usually kicks in after a few days, but only a slight improvement so far, the pain is still pretty bad. She did send me for a blood test for my vitamin
I had a hospital appointment last week, only 2 months since rituximab infusion and my hands are so painful. The nurse gave me a steroid injection, which usually kicks in after a few days, but only a slight improvement so far, the pain is still pretty bad. She did send me for a blood test for my vitamin
Thereseh
in
NRAS
6 years ago
Update on Round 2 FCR
Hi everyone! As promised I would let you know how it's going. Round 2 was uneventful as well ! It was such a relief to not have any side effects. I noticed I was a little tired one extra day after chemo was done. First round I was tired and not so hungry for 2 days. This time it was 3 days. Don't
Hi everyone! As promised I would let you know how it's going. Round 2 was uneventful as well ! It was such a relief to not have any side effects. I noticed I was a little tired one extra day after chemo was done. First round I was tired and not so hungry for 2 days. This time it was 3 days. Don't
GMa27
in
CLL Support
6 years ago
Belimumab and Rituximab combo
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
Hello! I have SLE which and my rheumy has recently suggested Rituximab and Belimumab infusions combo (Rituxi every 6 months with Belimumab as maintenance in between, taken monthly). Has anyone had this done and what was your experience like? I am having a bad period of flare ups this year including many
LydiaG
in
LUPUS UK
6 years ago
Tacrolimus?
Lupus 15+ years. Chloroquine, Cellcept, Azathioprine, one dose of Rituximab. Now starting on Tacrolimus but worried about long term. Anyone else?
Lupus 15+ years. Chloroquine, Cellcept, Azathioprine, one dose of Rituximab. Now starting on Tacrolimus but worried about long term. Anyone else?
patient165
in
LUPUS UK
6 years ago
Night sweats after FCR
Hi All, Completed first round of FCR 4 days ago pulled up reasonably well went back to work on Monday so happy so far. One thing I am soaked at night with night sweats each night since. Has anybody else had the same? Advice please!! 😁
Hi All, Completed first round of FCR 4 days ago pulled up reasonably well went back to work on Monday so happy so far. One thing I am soaked at night with night sweats each night since. Has anybody else had the same? Advice please!! 😁
Shirty78
in
CLL Support
6 years ago
2nd round Rituximab
So tomorrow is 2nd round of Rituximab. Nothing un toward happened after the first I am pleased to say. So hopefully same again. Let’s hope it kicks in soon after tomorrow!! Q. Does anyone know if I will be given the same as in steroid intravenously and Piriton again? The dr gave me a rescue course
So tomorrow is 2nd round of Rituximab. Nothing un toward happened after the first I am pleased to say. So hopefully same again. Let’s hope it kicks in soon after tomorrow!! Q. Does anyone know if I will be given the same as in steroid intravenously and Piriton again? The dr gave me a rescue course
Tessthomy
in
NRAS
6 years ago
Ibrutinib and NHSE current position.
Dear all As you know I am fighting for the right to be prescribed the drug my consultant thinks is the best treatment for me which is Ibrutinib. However because my relapse is after the 3 year point (3.8 years) I am denied that treatment. As part of the invite for a review in July by NHSE I emailed my
Dear all As you know I am fighting for the right to be prescribed the drug my consultant thinks is the best treatment for me which is Ibrutinib. However because my relapse is after the 3 year point (3.8 years) I am denied that treatment. As part of the invite for a review in July by NHSE I emailed my
Mick491
in
CLL Support
6 years ago
FCR Treatment, 4 cycles or 6, follow up
About a month ago, I posted that I was considering stopping FCR treatment after 4 cycles pending a Bone Marrow Biopsy and PET scan. The results are in and the BMB showed "NO residual CLL detected" and the Normocellular at 40% cellular, Normal for my age. The March BMB, when I was diagnosed, showed
About a month ago, I posted that I was considering stopping FCR treatment after 4 cycles pending a Bone Marrow Biopsy and PET scan. The results are in and the BMB showed "NO residual CLL detected" and the Normocellular at 40% cellular, Normal for my age. The March BMB, when I was diagnosed, showed
severdon
in
CLL Support
6 years ago
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