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High fever as side effect of Ibrutinib ?
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I am on monthly IVIG because of frequent pneumonias. Helped really good. Now my CLL has returned . 4 months ago a low grade fever started , about
GIDI
in
CLL Support
7 years ago
Advice with starting FCR
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with me for these long treatments? I will be taking anti nausea and other medications to help reduce side effects. I am looking forward to saying
Jemisavs5
in
CLL Support
7 years ago
Choices, choices!! FCR or Trial...?
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained
AnjiP
in
CLL Support
7 years ago
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Neutropenia problems - Non-Hodgkins Lymphoma
My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her leucocytes count is 200, the highest she ever had was 600 a couple of days ago, she was told the normal count is between 4000 and 10 000. The hospital
My sister was diagnosed agressive malignant Non-Hodgkins lymphoma. She had chemotherapy using rituximab viusimilar and bendamusten drugs, after 3 weeks her leucocytes count is 200, the highest she ever had was 600 a couple of days ago, she was told the normal count is between 4000 and 10 000. The hospital
gaby1953
in
CLL Support
7 years ago
Rituximab
Hi Has anyone had full dose rituximab for their itp. (I have had the itp dose with no success so consultant wants to give full dose) if anyone has had full dose rituximab how did they get on and was there any side effects and did it work
Hi Has anyone had full dose rituximab for their itp. (I have had the itp dose with no success so consultant wants to give full dose) if anyone has had full dose rituximab how did they get on and was there any side effects and did it work
Kazpig1
in
ITP Support Association
7 years ago
FCR
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but did get anti-sick tabs and anti virals, oh and also anti kidney and chest infection tabs. Only negs have been tiredness and some quite bad constipation
bendintheroad1
in
CLL Support
7 years ago
I've lost my voice!
Despite now being in remission (patient at Addenbrookes) and coming up soon for my first maintenance dose of Rituximab, I have lost my voice. Apparently it could be Aphasia (I read it on the internet so it must be true!). Has anyone else had this?
Despite now being in remission (patient at Addenbrookes) and coming up soon for my first maintenance dose of Rituximab, I have lost my voice. Apparently it could be Aphasia (I read it on the internet so it must be true!). Has anyone else had this?
Wrigglymonkey
in
Vasculitis UK
7 years ago
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
Hi all! After a reminder today of a member, I simply steal the time in my hectical life to finally write some, as promised earlier, about my treatment with FCR. Part One: After a lot of researching, I finally felt that FCR was the right path in the treatment of my CLL. It took some time for that decision
Hi all! After a reminder today of a member, I simply steal the time in my hectical life to finally write some, as promised earlier, about my treatment with FCR. Part One: After a lot of researching, I finally felt that FCR was the right path in the treatment of my CLL. It took some time for that decision
RemusTh
in
CLL Support
7 years ago
Hydroxychloroquine Reaction possibly??☹️
Hi everyone, im feeling a bit low lately , my joints (hips and hands) are more inflammed, lymph nodes sore again , head is foggy and increased fatigue. I am due 3rd rituximab infusion the end of july so are the increased symptoms because im on the run down to that ?? I have also developed a rash on
Hi everyone, im feeling a bit low lately , my joints (hips and hands) are more inflammed, lymph nodes sore again , head is foggy and increased fatigue. I am due 3rd rituximab infusion the end of july so are the increased symptoms because im on the run down to that ?? I have also developed a rash on
weathervane
in
LUPUS UK
7 years ago
Hi all UK vasculitis sufferers/ Rituximab
If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a fortnight apart last year, but am now on 1 infusion every 6 months and they are calling it 'maintenance' RTX therapy. I am with David Jayne at Addenbrooke's
If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a fortnight apart last year, but am now on 1 infusion every 6 months and they are calling it 'maintenance' RTX therapy. I am with David Jayne at Addenbrooke's
2534
in
Vasculitis UK
7 years ago
Hydroxychloroquine Reaction possibly??😲
Hi everyone, im feeling a bit low lately , my joints (hips and hands) are more inflammed, lymph nodes sore again , head is foggy and increased fatigue. I am due 3rd rituximab infusion the end of july so are the increased symptoms because im on the run down to that ?? I have also developed a rash on
Hi everyone, im feeling a bit low lately , my joints (hips and hands) are more inflammed, lymph nodes sore again , head is foggy and increased fatigue. I am due 3rd rituximab infusion the end of july so are the increased symptoms because im on the run down to that ?? I have also developed a rash on
weathervane
in
The Australian Sjögren's Syndrome Association
7 years ago
Vacation
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
I have had CLL a couple of years now. I am a year and a half post FCR, and it has worked despite the fact that I am unmutated. I do tend to get infections a great deal, and IVIG helps tremendously. Here is my question. We are heading to Idaho for the lakes and mountains. I worry about infections
beanlake14
in
CLL Support
7 years ago
Rituximab and low neutrophil count
Hi, has anyone on here had rituximab treatment and had a very low neutrophil count. My sister has CCS and have just been researching and there seems to be a link of patients developing neutropenia, I just wanted to see if anyone else has experienced this or has any advice. We are attending addenbrookes
Hi, has anyone on here had rituximab treatment and had a very low neutrophil count. My sister has CCS and have just been researching and there seems to be a link of patients developing neutropenia, I just wanted to see if anyone else has experienced this or has any advice. We are attending addenbrookes
Cloe
in
Vasculitis UK
7 years ago
Rituximab and ibd
Hi I have had RA for 17 years and mostly controlled with drugs, has anybody had any problems after rituximab with bowel problems?? I have had 4 rounds of the drug but now developed inflammatory bowel disease and wondered if there could be a link??? Thanks 😊😊
Hi I have had RA for 17 years and mostly controlled with drugs, has anybody had any problems after rituximab with bowel problems?? I have had 4 rounds of the drug but now developed inflammatory bowel disease and wondered if there could be a link??? Thanks 😊😊
debsy29
in
NRAS
7 years ago
Hello, I'm new here but have had symptoms for many years
Hello there I've been looking at this site frequently since I discovered it. I'm amazed by the amount of knowledge here and am hoping I can pick up some tips. I was diagnosed with CCP Pos RA in 2013, although I had joint symptoms for about 5 years before. They diagnosed Palindromic RA, but I think I
Hello there I've been looking at this site frequently since I discovered it. I'm amazed by the amount of knowledge here and am hoping I can pick up some tips. I was diagnosed with CCP Pos RA in 2013, although I had joint symptoms for about 5 years before. They diagnosed Palindromic RA, but I think I
StormySeas
in
NRAS
7 years ago
Does Tinnitus drive you crazy? Or it it just me?
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
I have experienced varying degrees of tinnitus over the last decade or so. I may have had CLL for that period too (CLL diagnosed following pre-op assessment for prostate problem in Jan 2015 then 6 cycles FCR and 18 months remission) When I took medical advice (2004?) it was accompanied with dizziness
thelutondodger
in
CLL Support
7 years ago
Rituximab
Has anyone had an allergic reaction to Rituximab 5 weeks after infusion
Has anyone had an allergic reaction to Rituximab 5 weeks after infusion
Hidden
in
Vasculitis UK
7 years ago
Bendamustine-Rituximab - When do cytopenias disappear? During treatment? Post-treatment?
Has anyone here done BR (Bendamustine-Rituximab) and actually felt great/normal afterwards? I.e., gotten their life back as a result of this treatment? No fatigue, no cytopenias remaining (anemia, neutropenia, thrombocytopenia), no chronic chest infections, no Late-Onset Neutropenia (linked to Rituximab
Has anyone here done BR (Bendamustine-Rituximab) and actually felt great/normal afterwards? I.e., gotten their life back as a result of this treatment? No fatigue, no cytopenias remaining (anemia, neutropenia, thrombocytopenia), no chronic chest infections, no Late-Onset Neutropenia (linked to Rituximab
PlanetaryKim
in
CLL Support
7 years ago
M A I Infection
Hi guys, hope everyone is feeling well and safe and my heart goes out to anyone who has been affected with the recent tragedies. Quick question, has anyone ever had an "m a i" infection. I have spent last two months in hospital. It's a cousin to the t.b. family. Am home now, but still in pain. I was
Hi guys, hope everyone is feeling well and safe and my heart goes out to anyone who has been affected with the recent tragedies. Quick question, has anyone ever had an "m a i" infection. I have spent last two months in hospital. It's a cousin to the t.b. family. Am home now, but still in pain. I was
Carbar
in
LUPUS UK
7 years ago
Reassessment of Anti-CD20 Therapy in Lymphoid Malignancies: Impact, Limitations, and New Directions (Rituximab, Ofatumumab and Obinutuzumab)
[i]'The addition of anti-CD20 monoclonal antibodies to the treatment of B-cell malignancies has dramatically affected the field as well as the lives of patients. Rituximab in particular has been combined safely with conventional chemotherapy and has resulted in improved overall survival in major histologic
[i]'The addition of anti-CD20 monoclonal antibodies to the treatment of B-cell malignancies has dramatically affected the field as well as the lives of patients. Rituximab in particular has been combined safely with conventional chemotherapy and has resulted in improved overall survival in major histologic
AussieNeil
Partner
in
CLL Support
7 years ago
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