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Newbe
Hi. I'm Jackie and have joined today. Only just found the site. I have sero positive rheumatoid arthritis plus osteoarthritis for many years now.Double whammy! On Monday I will be having my first infusion of Rituximab. I've read all the leaflets spoken to consultant and special nurses so now it's down
Hi. I'm Jackie and have joined today. Only just found the site. I have sero positive rheumatoid arthritis plus osteoarthritis for many years now.Double whammy! On Monday I will be having my first infusion of Rituximab. I've read all the leaflets spoken to consultant and special nurses so now it's down
Jackie1947
in
NRAS
8 years ago
Want to Hear From a Man Who Has Lived With CLL for 38 Years? Read Doyle's Story Here!
Thought, since I was once told I had 3-5 years, 37 years ago, I would share some of my background with you. First treated by local hematology/oncologist in Denver with Leukeran and prednisone. Likely before it was needed. Later seen by Dr Freireich at MDA. His people round tabled my case and chose
Thought, since I was once told I had 3-5 years, 37 years ago, I would share some of my background with you. First treated by local hematology/oncologist in Denver with Leukeran and prednisone. Likely before it was needed. Later seen by Dr Freireich at MDA. His people round tabled my case and chose
aking90
in
CLL America Support
8 years ago
Left sided heart failure and Vasculitis. Anyone else been diagnosed with this ?
I was diagnosed with WG over 17 years ago with Saddle nose deformity and I have chronic kidney failure too. I have been receiving Rituximab every 6 months for the last few years and have been lucky not to have had steroids for approx the last 10 years. I'm 55 years old. Since my last infusion in October
I was diagnosed with WG over 17 years ago with Saddle nose deformity and I have chronic kidney failure too. I have been receiving Rituximab every 6 months for the last few years and have been lucky not to have had steroids for approx the last 10 years. I'm 55 years old. Since my last infusion in October
Essex-jill
in
Vasculitis UK
8 years ago
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B Cells
Indicators as why Rituximab is effective in some though not all cases a research paper that if replicated identifies responders by profile of B cells a phenotype of this disease with a biological marker. http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/abstract
Indicators as why Rituximab is effective in some though not all cases a research paper that if replicated identifies responders by profile of B cells a phenotype of this disease with a biological marker. http://onlinelibrary.wiley.com/doi/10.1111/cei.12749/abstract
readerlist
in
Ramsays Disease
8 years ago
Flair trail update Ibrutinib and Rituximab round 4
About to have infusion of Riutximab 5 this week. saw doctor yesterday. I have been suffering increasing joint and muscle pain over the last 2 months. Sometimes vey bad, and very debilitating. Maximum advised painkillers combining paracetemol and codeine do not really affect the pain at all. As mentioned
About to have infusion of Riutximab 5 this week. saw doctor yesterday. I have been suffering increasing joint and muscle pain over the last 2 months. Sometimes vey bad, and very debilitating. Maximum advised painkillers combining paracetemol and codeine do not really affect the pain at all. As mentioned
romarin
in
CLL Support
8 years ago
CLL&Dizziness,Cloudy Brain....anyone?
I was diagnosed with CLL 3 years ago. I have had skin issues, severe allergies all of a sudden to things I was never allergic to prior to diagnosis. I did 4 round of Rituximab and then a year later tried Imbruvica. I truly believe the Rituximab caused my random sores. After getting off the Imbruvica
I was diagnosed with CLL 3 years ago. I have had skin issues, severe allergies all of a sudden to things I was never allergic to prior to diagnosis. I did 4 round of Rituximab and then a year later tried Imbruvica. I truly believe the Rituximab caused my random sores. After getting off the Imbruvica
deanna2289
in
CLL Support
8 years ago
Giant cell hepatitis
Hi all I'm new to this page I'm looking for information on giant cell hepatitis if anyone has any I would be very great full, my son is two year old and has giant cell hepatitis and autoimmune haemolytic anaemia I no to have both them together its very rare, he went into full liver failure 11 months
Hi all I'm new to this page I'm looking for information on giant cell hepatitis if anyone has any I would be very great full, my son is two year old and has giant cell hepatitis and autoimmune haemolytic anaemia I no to have both them together its very rare, he went into full liver failure 11 months
Rueben13
in
Children's Liver Disease Foundation
8 years ago
Is ibrutinib enough?
Hi all, new to posting, so hope to be concise as possible. Currently on ibrutinib now for 14 months with a wonderful response other than the multitude of irritating side effects. My question is do I continue to be satisfied with where I am in treatment or should I be more aggressive in seeking a complete
Hi all, new to posting, so hope to be concise as possible. Currently on ibrutinib now for 14 months with a wonderful response other than the multitude of irritating side effects. My question is do I continue to be satisfied with where I am in treatment or should I be more aggressive in seeking a complete
kelcorn92
in
CLL Support
8 years ago
Transferring treatment to another country
I've been told today that I need to start FCR treatment soon for my CLL. This will be my first treatment having been diagnosed in Nov 2011. Trouble is, my wife and I are planning to move back to her home country of Denmark in April. My haematologist says that they would provide the necessary papers
I've been told today that I need to start FCR treatment soon for my CLL. This will be my first treatment having been diagnosed in Nov 2011. Trouble is, my wife and I are planning to move back to her home country of Denmark in April. My haematologist says that they would provide the necessary papers
bendintheroad1
in
CLL Support
8 years ago
Any way to shrink lymph nodes without full treatment?
Hi, I was diagnosed in late November of 2014. On w&w with appointments every 3 months until my last checkup in October 2015 where they 'signed me off' for 6 months after a FISH prognostic showed no 'bad' markers. So far so good, apart from the lymph nodes in my neck and jaw. They have been swollen pretty
Hi, I was diagnosed in late November of 2014. On w&w with appointments every 3 months until my last checkup in October 2015 where they 'signed me off' for 6 months after a FISH prognostic showed no 'bad' markers. So far so good, apart from the lymph nodes in my neck and jaw. They have been swollen pretty
jasonfox
in
CLL Support
8 years ago
Update before starting 2nd FCR treatment v
Hi. My 1st treatment FCR has been challenging to say the least. The actual treatment was what I expected after reading all your messages. The normal tiredness and just feeling unwell. I noticed a rash starting and it seen my consultant who said it was an allergy to the antibiotics I was given. So not
Hi. My 1st treatment FCR has been challenging to say the least. The actual treatment was what I expected after reading all your messages. The normal tiredness and just feeling unwell. I noticed a rash starting and it seen my consultant who said it was an allergy to the antibiotics I was given. So not
Louiej
in
CLL Support
8 years ago
Month 6 on iFCR and Going Strong
I last posted four months ago when my wife "NoMoreCLL" began the Ibrutinib plus FCR Study. We're here at the Farber today, on Day 1 of 3, Month 6 of 6 for the final set of infusions. As of mid-Study (end of Cycle 3) she had MRD Positive for both blood and marrow...then on the cusp of MRD Negativity
I last posted four months ago when my wife "NoMoreCLL" began the Ibrutinib plus FCR Study. We're here at the Farber today, on Day 1 of 3, Month 6 of 6 for the final set of infusions. As of mid-Study (end of Cycle 3) she had MRD Positive for both blood and marrow...then on the cusp of MRD Negativity
ltcbbaker
in
CLL Support
8 years ago
Out of remission?
My very first post but I have been following for awhile. Exactly when is a person considered out of remission? I was Dx with CLL in 2012. 4 rounds of FCR in 2013. In remission for almost three years. But for the last year my blood numbers have been trending up. White count now 8.2, ACL 3. If they rise
My very first post but I have been following for awhile. Exactly when is a person considered out of remission? I was Dx with CLL in 2012. 4 rounds of FCR in 2013. In remission for almost three years. But for the last year my blood numbers have been trending up. White count now 8.2, ACL 3. If they rise
Bama-Girl
in
CLL Support
8 years ago
Have you been diagnosed with IgG4 Related Disease? If so, please contact John Mills @VUK.
1) Have you been diagnosed with IgG4 disease? 2 ) Have you been diagnosed with IgG4 disease and been given Rituximab? If you can answer yes to either question , could you please contact John Mills, chairman of VUK, by 5pm today. john.mills@vasculitis.org.uk Thank you Susan
1) Have you been diagnosed with IgG4 disease? 2 ) Have you been diagnosed with IgG4 disease and been given Rituximab? If you can answer yes to either question , could you please contact John Mills, chairman of VUK, by 5pm today. john.mills@vasculitis.org.uk Thank you Susan
Suzym2u
Vasculitis UK
in
Vasculitis UK
8 years ago
Mr Steven Buckley
GPA Dx Sept 2010 with Kidney involvement.Relapse Nov 2015 with Lung nodule involvement,recently received initial 2 Rituximab infusions and so far so good apart from the pred of course.
GPA Dx Sept 2010 with Kidney involvement.Relapse Nov 2015 with Lung nodule involvement,recently received initial 2 Rituximab infusions and so far so good apart from the pred of course.
Steven_buckley1GPA
in
Vasculitis UK
8 years ago
Knee op & rituximab infusion
There seems to be some progress on my next knee op (thank heavens I've only got 2!) I've received the letter saying I can expect the op within the 12 week limit. And the rheumy says that he'll delay my rituximab until 2 weeks after the op. The waiting list people say I can expect the op by the end of
There seems to be some progress on my next knee op (thank heavens I've only got 2!) I've received the letter saying I can expect the op within the 12 week limit. And the rheumy says that he'll delay my rituximab until 2 weeks after the op. The waiting list people say I can expect the op by the end of
cathie
in
NRAS
8 years ago
Inequality
I'm feeling down. My first knee replacement seems fine, but I now have to wait my turn for the second in order to be able to function properly. I can still hardly walk, cant really function on my own and have to rely on my long suffering partner. Normally I can cope with this all, waiting too for the
I'm feeling down. My first knee replacement seems fine, but I now have to wait my turn for the second in order to be able to function properly. I can still hardly walk, cant really function on my own and have to rely on my long suffering partner. Normally I can cope with this all, waiting too for the
cathie
in
NRAS
8 years ago
FCR follow up is CT necessary?
Hi, we are coming up on two years since my husband finished a 6 month treatment with fcr. We had been told he had a "complete response with incomplete recovery of the bone marrow." His blood counts improve some then dwindle some; currently neutropenic again barely above 500. His onco has been insisting
Hi, we are coming up on two years since my husband finished a 6 month treatment with fcr. We had been told he had a "complete response with incomplete recovery of the bone marrow." His blood counts improve some then dwindle some; currently neutropenic again barely above 500. His onco has been insisting
dwolden
in
CLL Support
8 years ago
Azatheoprine
Hi guys, I've recently been under-going treatment for GPA and have responded really well to rituximab which I was given about 2 months ago. My consultant has today informed me that he wants to put me on a daily dose of Azatheoprine to help maintain my remission (basically because Rituximab is too expensive
Hi guys, I've recently been under-going treatment for GPA and have responded really well to rituximab which I was given about 2 months ago. My consultant has today informed me that he wants to put me on a daily dose of Azatheoprine to help maintain my remission (basically because Rituximab is too expensive
Marcus1988
in
Vasculitis UK
8 years ago
discouraged on FLAIR
Flair trail. After Rituximab infusion 3, about 3 weeks ago. A lot of muscle pain, paracetamol hardly takes the edge off. Still tired though flashes of normality and desire to work. Some days of depression. Still the bloods have turned, after peaking at just over WBC of 300 as predicted they have now
Flair trail. After Rituximab infusion 3, about 3 weeks ago. A lot of muscle pain, paracetamol hardly takes the edge off. Still tired though flashes of normality and desire to work. Some days of depression. Still the bloods have turned, after peaking at just over WBC of 300 as predicted they have now
romarin
in
CLL Support
8 years ago
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