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How compromised is the immune system ? Rituximab, Abatacept
Hi there, I hope everybody is well! Does anyone know how much compromised the immune system actually is in percentage if you take for example 150mg Azathioprine and 5mg Prednisolone for Wegeners ? Has anyone experience with switching to Rituximab ? (after a year of the above, it seems mild symptoms are
Hi there, I hope everybody is well! Does anyone know how much compromised the immune system actually is in percentage if you take for example 150mg Azathioprine and 5mg Prednisolone for Wegeners ? Has anyone experience with switching to Rituximab ? (after a year of the above, it seems mild symptoms are
Condensation
in
Vasculitis UK
4 years ago
High platelets and poor consult
Because of high platelets GP practice contacted rheumatology. Nurse said she would refer me to consultant (new to post). I got an appointment the next week. Well she thought I was there for a routine appt I had to tell her I was referred. She felt my joints very gently and actually said I don't know
Because of high platelets GP practice contacted rheumatology. Nurse said she would refer me to consultant (new to post). I got an appointment the next week. Well she thought I was there for a routine appt I had to tell her I was referred. She felt my joints very gently and actually said I don't know
28maggie11
in
NRAS
4 years ago
Acalabrutinib plus Obinutuzumab in Treatment-Naïve and Relapsed/Refractory CLL
Overall response rates were 95% (treatment-naïve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naïve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naïve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Overall response rates were 95% (treatment-naïve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naïve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naïve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Jm954
Administrator
in
CLL Support
4 years ago
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Cll
Hi,my dad was detected with CLL I December end,wbc720000,HBO 5.5 .He has undergone 2 chemos of rituximab and endoxon,ie,cyclophosphamide. From today he started ibrutinib 420 ,he is having severe backache ,headache and also little feverish.are these side effects? He is 80 yrs old.Now his count is 290000
Hi,my dad was detected with CLL I December end,wbc720000,HBO 5.5 .He has undergone 2 chemos of rituximab and endoxon,ie,cyclophosphamide. From today he started ibrutinib 420 ,he is having severe backache ,headache and also little feverish.are these side effects? He is 80 yrs old.Now his count is 290000
sweetromeet
in
CLL Support
4 years ago
Wishes
For a very odd Easter I wish you all lots of health and successes ! Seven month after FCR I feel very well and healthy and wish you all the same ! Anna
For a very odd Easter I wish you all lots of health and successes ! Seven month after FCR I feel very well and healthy and wish you all the same ! Anna
Ankakoza
in
CLL Support
4 years ago
Wearing face masks
Hi there, you can buy face masks online from reputable shops and from some chemists. Make sure you buy ones which filter out viruses. I always use them if I'm off colour when I visit my mum who is on Rituximab for vasculitis and RA. Mum always wears one when she is on a plane, to help stop catching germs
Hi there, you can buy face masks online from reputable shops and from some chemists. Make sure you buy ones which filter out viruses. I always use them if I'm off colour when I visit my mum who is on Rituximab for vasculitis and RA. Mum always wears one when she is on a plane, to help stop catching germs
treesy
in
Vasculitis UK
4 years ago
Shield or not to shield - confusing advice
I was diagnosed with CLL in Spring of 2011 and undertook a variation of the FCR chemo treatment on the ARCTIC clinical trial in the Autumn. Several years ago I was advised that I was in full remission and see my consultant every 4-6 months. I have not received a letter or text from the NHS advising
I was diagnosed with CLL in Spring of 2011 and undertook a variation of the FCR chemo treatment on the ARCTIC clinical trial in the Autumn. Several years ago I was advised that I was in full remission and see my consultant every 4-6 months. I have not received a letter or text from the NHS advising
Hidden
in
Positive Wellbeing During Self-Isolation
4 years ago
Rituximab subsequent courses
As Rituximab takes a while to kick in, why do they leave it so long between courses? It feels like being on a rollercoaster . It took 14 weeks for my husband to feel the benefits of his first course. After 6 months the effects tailed off. You then have to wait months for the subsequent course and the
As Rituximab takes a while to kick in, why do they leave it so long between courses? It feels like being on a rollercoaster . It took 14 weeks for my husband to feel the benefits of his first course. After 6 months the effects tailed off. You then have to wait months for the subsequent course and the
Pop007
in
LUPUS UK
4 years ago
Still ANCA positive
Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!
Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!
kitkatmum
in
Vasculitis UK
4 years ago
Has anyone had these problems with chemo
First diagnosed with CCL in Sept. 2019,from that that time to Jan. 2020 my WBC has gone from 15 to 68.In Jan. 2020 my RBC was 2.75, HGB 79, PLT 91, I was also given a bone biopsy with more than 90% involvement by CD5 positive B cells. The next day I was give an infusion of 2 bags of blood. The next week
First diagnosed with CCL in Sept. 2019,from that that time to Jan. 2020 my WBC has gone from 15 to 68.In Jan. 2020 my RBC was 2.75, HGB 79, PLT 91, I was also given a bone biopsy with more than 90% involvement by CD5 positive B cells. The next day I was give an infusion of 2 bags of blood. The next week
laldoroty
in
CLL Support
4 years ago
ACCEPTED INTO LOXO-305 CLINICAL TRIAL
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
steve5441
in
CLL Support
4 years ago
Concerns with CLL
Hi...my dad has been diagnosed with CLL .had 2 chemos of rituximab and endoxon combi.His wbc was 7 lacs plus..now it varies between 3 to 3.5 lacs after last week report.But latest report states that wbc count is 2.5 lacs.But we noticed that he had developed blood mark patches like blood clot on his hand
Hi...my dad has been diagnosed with CLL .had 2 chemos of rituximab and endoxon combi.His wbc was 7 lacs plus..now it varies between 3 to 3.5 lacs after last week report.But latest report states that wbc count is 2.5 lacs.But we noticed that he had developed blood mark patches like blood clot on his hand
sweetromeet
in
CLL Support
4 years ago
Pain relief Delay after having Rituximab and Lidocaine infusions.
I was wondering if anyone has had a problem with a delay with pain relief after having the above infusions. I have the Lidocaine infusion every 2 months for fibromyalja. I had to wait 3 months to get my 3rd set of Rituximab infusions for RD. It has been almost a month since I had the 3rd set and I am
I was wondering if anyone has had a problem with a delay with pain relief after having the above infusions. I have the Lidocaine infusion every 2 months for fibromyalja. I had to wait 3 months to get my 3rd set of Rituximab infusions for RD. It has been almost a month since I had the 3rd set and I am
Angels-delight
in
NRAS
4 years ago
IPFR in Wales - who’s had one approved for lupus services or treatments?
Hello! I’m just reading the WHSSC NHS Wales Policy on making decisions on IPFR - or Individual Patient Funding Request. As most of you know, myself and others in Pembrokeshire under Hywel Dda UHB have had IPFR applications turned down, using the fact that lupus patients can be looked after adequately
Hello! I’m just reading the WHSSC NHS Wales Policy on making decisions on IPFR - or Individual Patient Funding Request. As most of you know, myself and others in Pembrokeshire under Hywel Dda UHB have had IPFR applications turned down, using the fact that lupus patients can be looked after adequately
Wendy39
in
LUPUS UK
4 years ago
Lymphocyte count after FCR
9 months after end of FCR and lymphocytes 0.50 Meaning immune system still weak So as from tomorrow self isolate Also now see anyone with the coronavirus . One thing is they always have a low lymphocyte count So if I got it my count could go more say 0.15 and alone how dangerous would that be ?
9 months after end of FCR and lymphocytes 0.50 Meaning immune system still weak So as from tomorrow self isolate Also now see anyone with the coronavirus . One thing is they always have a low lymphocyte count So if I got it my count could go more say 0.15 and alone how dangerous would that be ?
Jsk1950
in
CLL Support
4 years ago
Metallic taste in mouth after rituximab
hi, I'm new here after being diagnosed with RA a year ago. I had my first infusion of rituximab just over 4 weeks ago & second 2 weeks ago and I've noticed a metallic taste in my mouth and I wondered if its connected to the meds, as Ive also had a dental teeth clean during that time but my dentist
hi, I'm new here after being diagnosed with RA a year ago. I had my first infusion of rituximab just over 4 weeks ago & second 2 weeks ago and I've noticed a metallic taste in my mouth and I wondered if its connected to the meds, as Ive also had a dental teeth clean during that time but my dentist
slightlyrumpled
in
NRAS
4 years ago
Are we part of the vulnerable group.
Hi folks Given today’s announcement may be obvious but I’m 7 years post FCR and bloods good. Question, are we in the vulnerable group and should socially isolate for 12 weeks. Stated at press conference vulnerable with chronic conditions and mentioned leukaemia. Thanks
Hi folks Given today’s announcement may be obvious but I’m 7 years post FCR and bloods good. Question, are we in the vulnerable group and should socially isolate for 12 weeks. Stated at press conference vulnerable with chronic conditions and mentioned leukaemia. Thanks
Billys60
in
CLL Support
4 years ago
After FCR are we more vulnerable to CoVid 19?
Given that after FCR treatment we are more at risk of lung cancer, are we more susceptible to becoming very ill or dying if we catch Covid19? I worry because my lungs are so much more sensitive now. I finished FCR eighteen months ago and I start to cough if I am near an open fire. My lungs begin to ache
Given that after FCR treatment we are more at risk of lung cancer, are we more susceptible to becoming very ill or dying if we catch Covid19? I worry because my lungs are so much more sensitive now. I finished FCR eighteen months ago and I start to cough if I am near an open fire. My lungs begin to ache
Mandy56
in
CLL Support
4 years ago
Rituximab and Bendamustine side effects
Hello, I've previously asked for people's opinions on taking the above drugs and I have had many very positive feedback. Many thanks for that. I just have another question. What were the side effects you had on these drugs? My partner has just had his second dose of these chemos. He has developed
Hello, I've previously asked for people's opinions on taking the above drugs and I have had many very positive feedback. Many thanks for that. I just have another question. What were the side effects you had on these drugs? My partner has just had his second dose of these chemos. He has developed
pollyg2016
in
Non Hodgkin's Lymphoma Friends
4 years ago
RITUXIMAB FOR SYSTEMIC SCLEROSIS?
Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all it can. My illness is relatively stable with my lung decline only minimal now but have terribly curled hands which have me struggling with everything
Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all it can. My illness is relatively stable with my lung decline only minimal now but have terribly curled hands which have me struggling with everything
momo17
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
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