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Life update
Hi friends! Wow, it has been quite awhile! So sorry, but I’ve had a lot going on this year. Just wanted to stop by and say hello to everyone. Long post, but lots to report! First, my dad passed away somewhat unexpectedly at the end of January. He had been chronically ill for awhile, but we weren
Hi friends! Wow, it has been quite awhile! So sorry, but I’ve had a lot going on this year. Just wanted to stop by and say hello to everyone. Long post, but lots to report! First, my dad passed away somewhat unexpectedly at the end of January. He had been chronically ill for awhile, but we weren
Jer29-11
in
My MSAA Community
10 months ago
sore scalp after Rituximab
have just had second Rituximab infusion and have got horrible horrible painful sores at bottom of scalp - any recommendations for a shampoo/cream that could help please ?
have just had second Rituximab infusion and have got horrible horrible painful sores at bottom of scalp - any recommendations for a shampoo/cream that could help please ?
beachbabe
in
NRAS
10 months ago
Ibrutinib stopped working, what’s next
Morning all,a quick recap on journey so far, FCR treatment which kept things at bay for 14 months, then onto Ibrutinib for 6 years approximately, currently lymph nodes at 5cm , next treatment starts in January Rituximab and Ventoclax for 2 years, just wondering if there are any alternatives? Thanks all
Morning all,a quick recap on journey so far, FCR treatment which kept things at bay for 14 months, then onto Ibrutinib for 6 years approximately, currently lymph nodes at 5cm , next treatment starts in January Rituximab and Ventoclax for 2 years, just wondering if there are any alternatives? Thanks all
Stacky66
in
CLL Support
6 months ago
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Protect-V trial
I have vasculitis GPA and have regular infusions of rituximab which is an immunosuppressant. On a recent trip to Addenbrookes (Cambridge Hospital) to see my consultant they signed me up to take part in the Protect-V clinical trial. An anti covid vaccine. Anyone else here involved in that trial or any
I have vasculitis GPA and have regular infusions of rituximab which is an immunosuppressant. On a recent trip to Addenbrookes (Cambridge Hospital) to see my consultant they signed me up to take part in the Protect-V clinical trial. An anti covid vaccine. Anyone else here involved in that trial or any
Gurberly
in
Vasculitis UK
10 months ago
Second Rituximab infusion.
Had my 2nd infusion today. Initial blood test showed low Haemoglobin. It took three attempts to insert the cannula so a bit sore. Antihistamine and steroids made me a little drowsy but infusion went smoothly with no dramas. The suite was full and looking around I felt fortunate seeing how poorly a
Had my 2nd infusion today. Initial blood test showed low Haemoglobin. It took three attempts to insert the cannula so a bit sore. Antihistamine and steroids made me a little drowsy but infusion went smoothly with no dramas. The suite was full and looking around I felt fortunate seeing how poorly a
Jacksc06
in
CLL Support
10 months ago
Similarities/difference with Waldenstroms? ?
I actually have Waldenstroms macroglobulinemia with associated fairly severe neuropathy. I read somewhere it's very similar to CLL with similar or same treatments?Fully diagnosed about 2 years ago, now apparently backdated to 2016 when the monoclonal peak was discovered. Treatments tried; Dexamethasone
I actually have Waldenstroms macroglobulinemia with associated fairly severe neuropathy. I read somewhere it's very similar to CLL with similar or same treatments?Fully diagnosed about 2 years ago, now apparently backdated to 2016 when the monoclonal peak was discovered. Treatments tried; Dexamethasone
Hidden
in
CLL Support
10 months ago
Lupus rash/spots spread to scalp.
Hi, I have Lupus and Sjogrens . This year has been difficult with increased photosensitivity. Skin rash has spread to my scalp. Red spots and flaky and itchy. Scalp can feel very sensitive at times. Just wondering if any one has had the same problem and what treatment was used? I am on 6 monthly
Hi, I have Lupus and Sjogrens . This year has been difficult with increased photosensitivity. Skin rash has spread to my scalp. Red spots and flaky and itchy. Scalp can feel very sensitive at times. Just wondering if any one has had the same problem and what treatment was used? I am on 6 monthly
Haired
in
LUPUS UK
10 months ago
Foot Fusion on Biologics
Has any one had foot surgery ( taviculalar fusion ) and on the biological Rituximab? How did it go please? How was the healing did anyone have problems? As having surgery and on Rituximab. Many thanks I would love to hear .
Has any one had foot surgery ( taviculalar fusion ) and on the biological Rituximab? How did it go please? How was the healing did anyone have problems? As having surgery and on Rituximab. Many thanks I would love to hear .
-Mii
in
NRAS
10 months ago
Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that [i]"In a phase 2 trial, anti-PD-1 inibitor tislelizumab + next gen BTK inhibitor zanubrutinib had an overall response rate of 58.3% in patients with Richter's
AussieNeil
Partner
in
CLL Support
7 months ago
Home again.
Got home at around 20:30 after first cycle of Rituximab. Had a poor night's sleep on the ward as usual, so hoping to sleep well tonight. No major dramas during the infusion. Bit of a headache and feel like I'm on fire but generally OK. Next cycle is Tuesday next week so one down three to go. Love and
Got home at around 20:30 after first cycle of Rituximab. Had a poor night's sleep on the ward as usual, so hoping to sleep well tonight. No major dramas during the infusion. Bit of a headache and feel like I'm on fire but generally OK. Next cycle is Tuesday next week so one down three to go. Love and
Jacksc06
in
CLL Support
10 months ago
Does anyone on similar meds to me for RA have Irritable Bowel Syndrome?
I've been on rituximab and Lefludomide for about ten years and all is reasonably stable. However over about five years I've developed IBS symptoms - wont repeat them here. They do limit what I can do and wonder if anyone else has suffered from them. I'm not convinced the meds are to blame incidentally
I've been on rituximab and Lefludomide for about ten years and all is reasonably stable. However over about five years I've developed IBS symptoms - wont repeat them here. They do limit what I can do and wonder if anyone else has suffered from them. I'm not convinced the meds are to blame incidentally
cathie
in
NRAS
10 months ago
4 weeks of Rituximab
I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 42 developed Pure red cell aplasia at the start of this year. Only side affects from Rituximab was fatigue day off infusion in the afternoon, I also take 150mg of Cyclosporine and 75mg prednisone daily. Been able to get back
I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 42 developed Pure red cell aplasia at the start of this year. Only side affects from Rituximab was fatigue day off infusion in the afternoon, I also take 150mg of Cyclosporine and 75mg prednisone daily. Been able to get back
Jimmy_9
in
CLL Support
11 months ago
Update.
Hi all. Been a bit quiet recently as I have had some issues. I had what I thought was heartburn a couple of weeks ago along with shortness of breath. After tests anECG and chest x-ray it is probable that I had a silent heart attack. Being monitored by the hospital. I have been exhausted recently so had
Hi all. Been a bit quiet recently as I have had some issues. I had what I thought was heartburn a couple of weeks ago along with shortness of breath. After tests anECG and chest x-ray it is probable that I had a silent heart attack. Being monitored by the hospital. I have been exhausted recently so had
Jacksc06
in
CLL Support
11 months ago
Rituximab treatment
Has anyone done Rituximab treatment in Canada? If so how many treatments did you do… and how did it go? What hospital did you do it in, and what doctor did the order.
Has anyone done Rituximab treatment in Canada? If so how many treatments did you do… and how did it go? What hospital did you do it in, and what doctor did the order.
Skyllark
in
Hughes Syndrome APS Forum
11 months ago
Tocilizumab - dizzyness and dry skin
Hi everyone I have recently changed from Baricitnib and methotrexate to tocilizumab. The reason for this is that after 11 years on methotrexate I was really struggling with side effects and I started to miss taking it as I think my body had become intolerant to it as I was feeling extremely rough with
Hi everyone I have recently changed from Baricitnib and methotrexate to tocilizumab. The reason for this is that after 11 years on methotrexate I was really struggling with side effects and I started to miss taking it as I think my body had become intolerant to it as I was feeling extremely rough with
Claire32
in
NRAS
11 months ago
up coming treatment with rituximab for pure red blood cell aplasia and CLL
Hi All I was diagnosed with CLL in 2019 and never had much issues with bloods only being slightly elevated and some under arm lymph nodes. The start of this year I was diagnosed with pure red blood cell aplasia, after taking Cyclosporine it bounced back a bit but after stopping the meds the red blood
Hi All I was diagnosed with CLL in 2019 and never had much issues with bloods only being slightly elevated and some under arm lymph nodes. The start of this year I was diagnosed with pure red blood cell aplasia, after taking Cyclosporine it bounced back a bit but after stopping the meds the red blood
Jimmy_9
in
CLL Support
1 year ago
How long rituximab?
I had my second ritibumax Infusion on 5th June. For the last three weeks my RA seems to be getting worse not better. I'm at the point where getting past 2pm in the afternoon without having to rest is almost impossible due to tiredness plus alot of pain especially in my hands, knees, ankles and shoulders
I had my second ritibumax Infusion on 5th June. For the last three weeks my RA seems to be getting worse not better. I'm at the point where getting past 2pm in the afternoon without having to rest is almost impossible due to tiredness plus alot of pain especially in my hands, knees, ankles and shoulders
RootsToots
in
NRAS
1 year ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
10 days ago
Rituximab
Morning all, I had my 1st dose of rituximab & 9 days later I am in full flare mode. In fact I haven’t fleck this bad since I was diagnosed 15 years ago 🙄 My original concern was swollen feet but this is something else. I’ll be calling RA nurse tomorrow but in the meanwhile, surely this can’t be right
Morning all, I had my 1st dose of rituximab & 9 days later I am in full flare mode. In fact I haven’t fleck this bad since I was diagnosed 15 years ago 🙄 My original concern was swollen feet but this is something else. I’ll be calling RA nurse tomorrow but in the meanwhile, surely this can’t be right
Ouch41
in
NRAS
1 year ago
Asymptomatic Trandmission
Does anyone have any data or medical journal articles, addressing the contagious for either Pre symptomatic infections or individuals that have asymptomatic viral infections.. Also, in my home state of Utah in the USA, I have not been able to find any published data on the current incident or presence
Does anyone have any data or medical journal articles, addressing the contagious for either Pre symptomatic infections or individuals that have asymptomatic viral infections.. Also, in my home state of Utah in the USA, I have not been able to find any published data on the current incident or presence
skipro
in
CLL Support
25 days ago
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