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Thoughts on CLL treatment and watch and wait
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
I’d be really interested in other people’s thought processes about this. I’m not a haematologist, and this is all in the realm of theory and so may not stand up to clinical trials or the real world. I guess in a way I’m trying to synthesize a philosophy of treatment. 1. Why do we watch and wait? As
AdrianUK
in
CLL Support
6 years ago
Blood transfusion after first round of FCR
Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart felt like it was labouring. I constantly had palpitations for two weeks and even a blackout Went to my GP last Monday, who sent me to local hospital
Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart felt like it was labouring. I constantly had palpitations for two weeks and even a blackout Went to my GP last Monday, who sent me to local hospital
Mandy56
in
CLL Support
6 years ago
What if venetoclax and/or ibritinib stops working?
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
Hi all, I am a 33 year old dutch male. I have had CLL since i am 24 and have been dealing with CLL for 9 years. I have mutated genes wich put me into a poor prognossis. I have had FCR when i was arround 26/27. I gave me 2 years of no threatment. Then it came back and i was place in a studie group
JanAmsterdam
in
CLL Support
6 years ago
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Burning Pins & Needles!
Hi everyone I will apologise now for the ranting and long winded post! I have CTD & RA and I take a lowering dose of Prednisolone (down to 6mg a day from 20mg), Lefludomide, Gabapentin, Hydroxychloroquine & Omniprozal. I also had my first 2 cycles of Rituximab in December and touch wood since then
Hi everyone I will apologise now for the ranting and long winded post! I have CTD & RA and I take a lowering dose of Prednisolone (down to 6mg a day from 20mg), Lefludomide, Gabapentin, Hydroxychloroquine & Omniprozal. I also had my first 2 cycles of Rituximab in December and touch wood since then
Bakbre
in
LUPUS UK
6 years ago
Lessons from five years of ibrutinib experience
This is a link to a paper that was released online a couple of months ago. I thought I’d take the opportunity to highlight some things from it and point out what we should and shouldn’t conclude from it. I’d be interested also to know any of your thoughts on this. Note this is an unlocked post so do
This is a link to a paper that was released online a couple of months ago. I thought I’d take the opportunity to highlight some things from it and point out what we should and shouldn’t conclude from it. I’d be interested also to know any of your thoughts on this. Note this is an unlocked post so do
AdrianUK
in
CLL Support
6 years ago
Manuka Honey
Hi has anyone taken anything particularly Manuka honey to help with low neutrophil ??? Or any ideas as how to get levels up as it’s delaying 2nd round FCR for my husband
Hi has anyone taken anything particularly Manuka honey to help with low neutrophil ??? Or any ideas as how to get levels up as it’s delaying 2nd round FCR for my husband
Sailormoon11
in
CLL Support
6 years ago
Working diagnosis Vasculitis responsible for Neuropathy secondary to R/A. Previous PMR diagnosis
Hi All, I have previously posted and discussed my farthers condition over the last 12-18 months. From my posts my family and I have been provided some priceless information and experience of the horrible condition R/A / PMR. After another failed attempt of Humeria @ the turn of the year, he was admitted
Hi All, I have previously posted and discussed my farthers condition over the last 12-18 months. From my posts my family and I have been provided some priceless information and experience of the horrible condition R/A / PMR. After another failed attempt of Humeria @ the turn of the year, he was admitted
Sonofjimmy
in
PMRGCAuk
6 years ago
** NHSE and NICE Ibrutinib update **
Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the
Jeremy Vine show today at 1pm.
He will be talking about his CLL and the fight to get the right treatment, Ibrutinib, following his relapse after
Sean O'Neill, Chief Reporter from The Times who broke the story about the failure of NHSE to prescribe Ibrutinib as per the NICE Guidance will be on the
Jeremy Vine show today at 1pm.
He will be talking about his CLL and the fight to get the right treatment, Ibrutinib, following his relapse after
Jm954
Administrator
in
CLL Support
6 years ago
Low white cell count - raising it with smoothies ?😳
Hello all , recap of probelm , wbc fluctuating between low and very low since August due to rituximab treatment for Sjögrens , slipped disc in December and need disc surgery . My surgery was cancelled on the 27th as wbc was 2.9 and neutrophils are 1.3 and there would be a risk of a spinal abscess .
Hello all , recap of probelm , wbc fluctuating between low and very low since August due to rituximab treatment for Sjögrens , slipped disc in December and need disc surgery . My surgery was cancelled on the 27th as wbc was 2.9 and neutrophils are 1.3 and there would be a risk of a spinal abscess .
weathervane
in
LUPUS UK
6 years ago
International Prognostic Index Calculator
ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an unlocked post so do not share your own results in the comments section unless you are happy for them to be shown in google search results. Feel free
ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an unlocked post so do not share your own results in the comments section unless you are happy for them to be shown in google search results. Feel free
AdrianUK
in
CLL Support
6 years ago
what happens after treatment of CLL ?
After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly or every 3 months to check if CLL is gone or came back, can anyone shed the light on this issue please, thanks. Firas
After treatment of CLL through FCR and getting into remission hopefully, how will the life of the CLL patient be, I mean do I have to do regular tests yearly or every 3 months to check if CLL is gone or came back, can anyone shed the light on this issue please, thanks. Firas
Nour80Leen2011
in
CLL Support
6 years ago
EGPA and Bronchiectasis
Hello everyone. Diagnosed with non severe Churg Strauss 5 years ago. Reasonably managed with pred. Rituximab, mycophenalate -no effect. Now just diagnosed with bronchiectasis and feel rotten. Diagnosis via chest consultant not vasculitis chap, so as yet, unsure of connection. My question is... anyone
Hello everyone. Diagnosed with non severe Churg Strauss 5 years ago. Reasonably managed with pred. Rituximab, mycophenalate -no effect. Now just diagnosed with bronchiectasis and feel rotten. Diagnosis via chest consultant not vasculitis chap, so as yet, unsure of connection. My question is... anyone
vivavida
in
Vasculitis UK
6 years ago
CLL treatment and hair loss
Hi everyone I am about to start treatment for CLL soon and most probably the treatment will be FCR meaning a mix of chemotherapy, are am I going to lose my hair? Can anyone share his/her experience with me, thanks. Firas
Hi everyone I am about to start treatment for CLL soon and most probably the treatment will be FCR meaning a mix of chemotherapy, are am I going to lose my hair? Can anyone share his/her experience with me, thanks. Firas
Nour80Leen2011
in
CLL Support
6 years ago
Cold
Hi guys I think I’m taking a cold or something how can I help to try and save giving this to my husband who’s having FCR treatment ???
Hi guys I think I’m taking a cold or something how can I help to try and save giving this to my husband who’s having FCR treatment ???
Sailormoon11
in
CLL Support
6 years ago
Starting Rituximab infusions for EGPA/Churg-Strauss
Help! I'm starting Rituxan infusions next Monday and I'm apprehensive. My EGPA-ChurgStrauss was being controlled (sorta) by prednisone (up and down a lot but was tapered to 8mg) + 150mg Azathioprine, plus a host of others meds for related... seemed ok for about a year. Recently, after a difficult winter
Help! I'm starting Rituxan infusions next Monday and I'm apprehensive. My EGPA-ChurgStrauss was being controlled (sorta) by prednisone (up and down a lot but was tapered to 8mg) + 150mg Azathioprine, plus a host of others meds for related... seemed ok for about a year. Recently, after a difficult winter
grindhaus
in
Vasculitis UK
6 years ago
Yet another side effect after FCR
After the acute anaemia, disappearing neutrophils and infection in both eyes, I now have a rash all over me, except my face. It’s 3 weeks since first FCR. The antibiotics i’m taking list a rash as a possible side effect. Has anyone else suffered this? No raised welts, just an annoying mildly itchy unattractive
After the acute anaemia, disappearing neutrophils and infection in both eyes, I now have a rash all over me, except my face. It’s 3 weeks since first FCR. The antibiotics i’m taking list a rash as a possible side effect. Has anyone else suffered this? No raised welts, just an annoying mildly itchy unattractive
Mandy56
in
CLL Support
6 years ago
Are these symptoms part of your RD?
Way before I was diagnosed with RD (although I had scleritis and was RA+) I would have days of great debility when I’d feel so weak and ill I’d simply have to lie in bed. My body would ache everywhere, I’d have a huge thirst, a headache, my brain would be muzzy and I’d feel so terrible I couldn’t even
Way before I was diagnosed with RD (although I had scleritis and was RA+) I would have days of great debility when I’d feel so weak and ill I’d simply have to lie in bed. My body would ache everywhere, I’d have a huge thirst, a headache, my brain would be muzzy and I’d feel so terrible I couldn’t even
StormySeas
in
NRAS
6 years ago
anyone had or tried eltrombopag or romiplostim
hi im coming of steroids and platelet count dropping,might have to have rituximab again but it only kept platelets high for over a year, has anyone had or heard of eltrombopag or romiplostim as consultant is on about trying this on me,apparently its only about 5 years old, regards
hi im coming of steroids and platelet count dropping,might have to have rituximab again but it only kept platelets high for over a year, has anyone had or heard of eltrombopag or romiplostim as consultant is on about trying this on me,apparently its only about 5 years old, regards
inxs1212
in
ITP Support Association
6 years ago
Big pharma and cancer
Saw this interesting post on immunotherapy in the Financial Times in the waiting room. Go to ft.com/pharmaceuticals There was also an article: « Drugmakers take an unorthodox route to cancer biosimilars » about the NHS buying Chinese biosimilar version, which they call « copycat » of Rituximab, Trastuzumab
Saw this interesting post on immunotherapy in the Financial Times in the waiting room. Go to ft.com/pharmaceuticals There was also an article: « Drugmakers take an unorthodox route to cancer biosimilars » about the NHS buying Chinese biosimilar version, which they call « copycat » of Rituximab, Trastuzumab
Hidden
in
Lung Conditions Community Forum
6 years ago
Was anyone else frightened to start Ivig treatments ?
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
I like to consider myself a pretty tough chick but for some reason I’m scared to start then for fear of long term side effects like the FCR did to me by giving me autoimmune neutropenia. In order to supposedly fix that I need these Ivig drips two days in a row for 5 hours every 3 weeks..... I worry
Luckyliss
in
CLL Support
6 years ago
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