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Flare??
On rituximab,,, had 3 or 4 treatments. Felt 3 months in that it was not working. Reaumy thinks it was a flare so going to try again in January. I thought you only flared if you had an infection. Help please
On rituximab,,, had 3 or 4 treatments. Felt 3 months in that it was not working. Reaumy thinks it was a flare so going to try again in January. I thought you only flared if you had an infection. Help please
28maggie11
in
NRAS
5 years ago
What is the difference between non fdg avid node and fdg avid node?
In my latest PET non fdg avid nodes were found after 4 cycle of FCR. What is the difference between nod fdg avid and fdg avid nodes.?
In my latest PET non fdg avid nodes were found after 4 cycle of FCR. What is the difference between nod fdg avid and fdg avid nodes.?
Supratim
in
CLL Support
5 years ago
GPA flare sinus pain
Hi, My GPA has recently flared up quite suddenly with severe sinus problems. To be honest I was stupid and left it too long before recognising the symptoms and kept telling myself that the daily sinus pain and bleeding was just a cold as everyone seems to have one at the minute. By the time I asked
Hi, My GPA has recently flared up quite suddenly with severe sinus problems. To be honest I was stupid and left it too long before recognising the symptoms and kept telling myself that the daily sinus pain and bleeding was just a cold as everyone seems to have one at the minute. By the time I asked
nicholson27
in
Vasculitis UK
5 years ago
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Rituximab after effects
This is about my fifth cycle of Rituximab and so far its been fine, although I have felt tired afterwards. This time it was two months later than the normal six months. I had the first of the two three days ago and am still feeling very tired but also have nausea. Has anyone else had this experience
This is about my fifth cycle of Rituximab and so far its been fine, although I have felt tired afterwards. This time it was two months later than the normal six months. I had the first of the two three days ago and am still feeling very tired but also have nausea. Has anyone else had this experience
cathie
in
NRAS
5 years ago
First line above at 69Y: Venetoclax vs Ibrutinib vs BR
Hello All, After consulting 3 of the best available doctors I could find all of the suggest different options and its up to us to chose. So far: 1) Venetoclax -they claim its the least side effects treatment (despite she does not have 17p deleton they say will be very effective) 2) Ibrutinib effective
Hello All, After consulting 3 of the best available doctors I could find all of the suggest different options and its up to us to chose. So far: 1) Venetoclax -they claim its the least side effects treatment (despite she does not have 17p deleton they say will be very effective) 2) Ibrutinib effective
paula_dae
in
CLL Support
5 years ago
Rituximab quandary
I've been on Orencia for about 3 years and I've never really felt that it was super effective, but continued it along with sulfasalazine and hydroxy. I received a steroid injection into my hip a few weeks ago and within days my old rings fit again and a pair of my boots were much more comfortable.
I've been on Orencia for about 3 years and I've never really felt that it was super effective, but continued it along with sulfasalazine and hydroxy. I received a steroid injection into my hip a few weeks ago and within days my old rings fit again and a pair of my boots were much more comfortable.
shareasmile
in
NRAS
5 years ago
Tocilizumab or Baricitinib?
HI -- I've had RA for 14 years, diagnosed at 40. Have had a great partnership with Enbrel for over 10 years. They changed me on to Humira, an equivalent (as an NHS cost-saving). Not sure if that interfered with my condition, but suffered with swelling and pain, in every joint. This has been ongoing since
HI -- I've had RA for 14 years, diagnosed at 40. Have had a great partnership with Enbrel for over 10 years. They changed me on to Humira, an equivalent (as an NHS cost-saving). Not sure if that interfered with my condition, but suffered with swelling and pain, in every joint. This has been ongoing since
Squarefish1
in
NRAS
5 years ago
Frustrated
Hi All I have suffered with RA for 7 yrs now and have tried numerous medications, 3 yrs ago I was put on enbryl which worked for me great still had the odd flare but I could cope with it then around June this year it stopped working so I went on to baracitinib tablets which have not worked, visited consultant
Hi All I have suffered with RA for 7 yrs now and have tried numerous medications, 3 yrs ago I was put on enbryl which worked for me great still had the odd flare but I could cope with it then around June this year it stopped working so I went on to baracitinib tablets which have not worked, visited consultant
dfur7785
in
NRAS
5 years ago
Mantle Cell Lymphoma Treatment
Just wonder if anyone participates in Window 2 clinical trial of MD Anderson where patients receive Ibrutinib in the first 4 months, combine with Rituximab and add Venetoclax in month 5. Chemo will be followed if in the medium and high risk. Then another 2-3 years in maintenance with Ibrutiniv, Venetoclax
Just wonder if anyone participates in Window 2 clinical trial of MD Anderson where patients receive Ibrutinib in the first 4 months, combine with Rituximab and add Venetoclax in month 5. Chemo will be followed if in the medium and high risk. Then another 2-3 years in maintenance with Ibrutiniv, Venetoclax
writepa
in
Non Hodgkin's Lymphoma Friends
5 years ago
Mantle Cell Lymphoma - Window 2 clinical trial
Just wonder if anyone participates in Window 2 clinical trial of MD Anderson where patients receive Ibrutinib in the first 4 months, combine with Rituximab and add Venetoclax in month 5. Chemo will be followed if in the medium and high risk. Then another 2-3 years in maintenance with Ibrutiniv, Venetoclax
Just wonder if anyone participates in Window 2 clinical trial of MD Anderson where patients receive Ibrutinib in the first 4 months, combine with Rituximab and add Venetoclax in month 5. Chemo will be followed if in the medium and high risk. Then another 2-3 years in maintenance with Ibrutiniv, Venetoclax
writepa
in
CLL Support
5 years ago
So the final moment came...we need treatment
AS long as we postponed it, the time had come so quickly. My mom WBC at 190 and hemoglobin below 10. The doctor said its our choice whether Rituximab + some additions, or Ibrutinib. I was thinking Ibrutinib is safe until the latest trial in BG, where 8 out of 10 people dies mainly from cardiovascular
AS long as we postponed it, the time had come so quickly. My mom WBC at 190 and hemoglobin below 10. The doctor said its our choice whether Rituximab + some additions, or Ibrutinib. I was thinking Ibrutinib is safe until the latest trial in BG, where 8 out of 10 people dies mainly from cardiovascular
paula_dae
in
CLL Support
5 years ago
Take both Nplate and Rituximab at the same time
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
I have ITP and Anticardiolipin Antibody. I took my first injection of Rituximab two days ago. Even my Platelet count fell to 1000 after injection but doctors still want to keep me on treatment with rituximab. And also they want to start the Nplate for me today . I've asked doctors if it's a good idea
farasad2001
in
ITP Support Association
5 years ago
Can Prolia trigger vasculitis
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
I was first diagnosed with Wegeners in November 2010 - sinus and lungs. Was on life support for 18 days. A small shadow appeared in 2015 in my lung and received 4 X 500 of rituximab and increased prednisolone (on 5mg maintenance) until all clear. I have all the usual other meds for diabetes etc. This
Corcaigh
in
Vasculitis UK
5 years ago
Adult with ITP and Antiphospholipid Antibodies
I’m 45, female and I’ve diagnosed with ITP since 16 years ago. Since then doctors tried different treatment including surgery to remove my spleen 14 years ago. A month ago my platelet's count fell to 7000. My doctor said they discovered I also have a condition called Antiphospholipid Antibodies. I
I’m 45, female and I’ve diagnosed with ITP since 16 years ago. Since then doctors tried different treatment including surgery to remove my spleen 14 years ago. A month ago my platelet's count fell to 7000. My doctor said they discovered I also have a condition called Antiphospholipid Antibodies. I
farasad2001
in
ITP Support Association
5 years ago
Lymph nodes after 6 rounds of FCR
Hi, My friend completed 6 rounds of FCR last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
Hi, My friend completed 6 rounds of FCR last month. Still i can see small small lymph nodes near neck, shoulder. But I am seeing that lymph node has increased in size little bit compared last month. Is this common? Anybody faced same like this. Please please help me to get more info on this.
pbaddi
in
CLL Support
5 years ago
Is low IgM a side-effect of CLL drug treatment?
Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first antibody to be made by the body to fight a new infection. Does IgM tend to be remain low as a result of taking Rituximab [Rituxan] or other CLL drugs? Are there any known drug or nutraceutical [nutritional supplements
Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first antibody to be made by the body to fight a new infection. Does IgM tend to be remain low as a result of taking Rituximab [Rituxan] or other CLL drugs? Are there any known drug or nutraceutical [nutritional supplements
Higsby
in
CLL Support
5 years ago
Any post FCR warriors struggling with the cold?
I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold. I am in bed with an electric blanket, 2 jumpers, 2 T shirts and
I finished FCR a year ago and in the past couple of months or so have begun to feel more like the old me and less tired. However, in this weather in the UK (8 degrees now, but was below freezing the last few days) I feel miserably cold. I am in bed with an electric blanket, 2 jumpers, 2 T shirts and
Mandy56
in
CLL Support
5 years ago
Starting Treatment
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
I've been on W & W for 6 years, mutated IGVH, All the good genetic marker. My numbers are all quite good, no symtoms, feeling normal for 65, very fit, and I would remain in W & W except for the fact that my Neurtrophil count is dangerously low, .8 as of yesterday, up from .5 2 weeks ago. My Onc/Hem
12Caine12
in
CLL Support
5 years ago
EHA 2019: Dr. Maloney on CAR-T and Dr. Davids of Chemo-Immunotherapy combinations
David Maloney is world expert in CAR-T therapy and was one of my doctors when I got my genetically modified cells in Seattle last year. Please enjoy their deeper dive into CAR-T from our conversation at EHA in Amsterdam. See: https://cllsociety.org/2019/11/eha-2019-dr-maloney-on-car-t-therapy-for-cll-chronic-lymphocytic-leukemia
David Maloney is world expert in CAR-T therapy and was one of my doctors when I got my genetically modified cells in Seattle last year. Please enjoy their deeper dive into CAR-T from our conversation at EHA in Amsterdam. See: https://cllsociety.org/2019/11/eha-2019-dr-maloney-on-car-t-therapy-for-cll-chronic-lymphocytic-leukemia
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
So far so good.
I posted about 6 months ago that 1 round of FCR nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range. Hopefully, the 1 round of treatment will
I posted about 6 months ago that 1 round of FCR nearly killed me. My Hemoglobin dropped to 45 and I needed many transfusions. They decided to abandon treatment and was put back on watch and wait. After my appointment today, all bloods are still in normal range. Hopefully, the 1 round of treatment will
Racing1961
in
CLL Support
5 years ago
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