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Back to methotrexate...which I'm allergic to?!?!
So since my hospital admission in July I've been off all ra drugs, I can tell you it's not been easy. After all the issues with my lungs and how every drug has given me the worst of its side effects I really believed in myself that I would go into my future without anymore ra drugs, that I would just
So since my hospital admission in July I've been off all ra drugs, I can tell you it's not been easy. After all the issues with my lungs and how every drug has given me the worst of its side effects I really believed in myself that I would go into my future without anymore ra drugs, that I would just
orchidcass77
in
NRAS
8 years ago
Good and the bad.
Good to hear that there is some GPS out there that take the time to follow up your hospital appointment. My experience is that the second my surgery haven't a clue what is going on with me. I have had lupus since 2008 my lungs heart kidneys liver and skin are involved pretty much my whole body. My main
Good to hear that there is some GPS out there that take the time to follow up your hospital appointment. My experience is that the second my surgery haven't a clue what is going on with me. I have had lupus since 2008 my lungs heart kidneys liver and skin are involved pretty much my whole body. My main
Silvertop46
in
LUPUS UK
8 years ago
Rituximab - side effects
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
Hi On Friday 16th December, I received my 2nd infusion of Rituximab - 2 weeks after the 1st infusion; this is for treatment of anca positive vasculitis, probably Churgg Strauss. I would be interested to hear from others how they felt at this stage and whether they had any side effects. I do feel a little
sealives
in
Vasculitis UK
8 years ago
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FCR Cycle 4 (For CLL) - Itchy Rash
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to
Rich316
in
CLL Support
7 years ago
IVIG Infusions
Hi, I am four years post FCR and have been suffering with lingering coughs following winter colds. At the end of last year i developed pneumonia following a cold in November. My hematologist has decided that I would benefit from IVIG infusions during the winter months, as he is worried I could damage
Hi, I am four years post FCR and have been suffering with lingering coughs following winter colds. At the end of last year i developed pneumonia following a cold in November. My hematologist has decided that I would benefit from IVIG infusions during the winter months, as he is worried I could damage
Colnegirl
in
CLL Support
8 years ago
Nervous
Starting Biological treatment this month on the 29th. Been told to expect to be there for quite a few hours as drug will be given intravenously. Followed by another session two weeks later. I am being given Rituximab. Don't know what to expect after first round. How long does it take to notice a
Starting Biological treatment this month on the 29th. Been told to expect to be there for quite a few hours as drug will be given intravenously. Followed by another session two weeks later. I am being given Rituximab. Don't know what to expect after first round. How long does it take to notice a
Ellieellie
in
NRAS
8 years ago
After Ibrutinib failure, lymphocytes up again. Maybe another trial with Idealisib
Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase. It
Now 8 months since I had to stop the FLAIR trial of Ibrutinib and Rituximab due to side effects (severe and debilitating muscle and joint pain) I have been pretty well with bloods within normal limits. Now, sigh, the lymphocyte count is up again and the concern is how quickly this will increase. It
romarin
in
CLL Support
8 years ago
House Moving Horror
After a 10 month roller-coaster, it's third time lucky and I am moving to a little cottage (with a lift and just two minutes away from the high road). It is quite a tardis and will incorporate a lift (which I hope not to use!) Moving day was supposed to be next Tuesday, but contracts still haven't
After a 10 month roller-coaster, it's third time lucky and I am moving to a little cottage (with a lift and just two minutes away from the high road). It is quite a tardis and will incorporate a lift (which I hope not to use!) Moving day was supposed to be next Tuesday, but contracts still haven't
Jora
in
NRAS
8 years ago
New member
Hi my name is KEITH and I am 66 years old and was diagnosed with Vasculitis Wenegers 12 months ago.Spent 2 weeks in St James Leeds having plasma exchange and then 5 months of cyclphos.Then on azothiprine and steroids but recently kidney function dropped dramaticaly so I start rituximab tomorrow with
Hi my name is KEITH and I am 66 years old and was diagnosed with Vasculitis Wenegers 12 months ago.Spent 2 weeks in St James Leeds having plasma exchange and then 5 months of cyclphos.Then on azothiprine and steroids but recently kidney function dropped dramaticaly so I start rituximab tomorrow with
Keithtim10
in
Vasculitis UK
8 years ago
Low dose Rituximab ITP treatment - any experience ?
Hi, I've just completed my 4 weeks of Rituximab infusions in response to Platelet counts that fell to single figures. I have been given the low dose regimen of 100ml per infusion which is was told was the standard ITP dose in my region. Does anyone have any experience ? Is it as effective as the high
Hi, I've just completed my 4 weeks of Rituximab infusions in response to Platelet counts that fell to single figures. I have been given the low dose regimen of 100ml per infusion which is was told was the standard ITP dose in my region. Does anyone have any experience ? Is it as effective as the high
prudencepayes
in
ITP Support Association
8 years ago
Fitness during and after FCR treatment
Hi All, I hope you are 'well'. This is my first post. I was diagnosed with CLL in 2011 aged 44yrs. Have considered myself very fit enjoying long hikes and swimming. In June 2016 I did a 5k charity open water swim in 90minutes. I now find myself, next week, requiring a 6 x 1month treatment with FCR. Can
Hi All, I hope you are 'well'. This is my first post. I was diagnosed with CLL in 2011 aged 44yrs. Have considered myself very fit enjoying long hikes and swimming. In June 2016 I did a 5k charity open water swim in 90minutes. I now find myself, next week, requiring a 6 x 1month treatment with FCR. Can
rsw147
in
CLL Support
8 years ago
Daughter of Newly Diagnosed CLL Patient - 3 Weeks Until Chemotherapy - Any information greatly appreciated!
Brand new to this forum, not a patient myself. My father was diagnosed this month and is already scheduled for treatment to begin in 4 weeks. Seems that many of you had lengthy W&W periods, but 5 years passed during which my father went without even visiting his GP. This was discovered this month, with
Brand new to this forum, not a patient myself. My father was diagnosed this month and is already scheduled for treatment to begin in 4 weeks. Seems that many of you had lengthy W&W periods, but 5 years passed during which my father went without even visiting his GP. This was discovered this month, with
LaurenM427
in
CLL Support
8 years ago
Atrial fibrillation on Imbruvica
Just had surgery for a hernia, stopped Imbruvica for a week before, holding off for another week before re starting. Really feel that advice to do so was good, healing is impaired with this medication. During routine pre opereative evaluation i was found to have premature Atrial contractions(PAC). and
Just had surgery for a hernia, stopped Imbruvica for a week before, holding off for another week before re starting. Really feel that advice to do so was good, healing is impaired with this medication. During routine pre opereative evaluation i was found to have premature Atrial contractions(PAC). and
Lenny123
in
CLL Support
8 years ago
Nephrologist
hi can you you help me with this case. patient is 27 yrs old who developed acute renal failure requirind dialysis. Renal biopsy was done and showed double glomerulopathy with pauci-immune GN and membranous nephropathy. She was advised for IV cyclophosphamide but refused due to fertility issues. So, Rituximab
hi can you you help me with this case. patient is 27 yrs old who developed acute renal failure requirind dialysis. Renal biopsy was done and showed double glomerulopathy with pauci-immune GN and membranous nephropathy. She was advised for IV cyclophosphamide but refused due to fertility issues. So, Rituximab
hassbeeb
in
Vasculitis UK
8 years ago
Steroids & IVig only works briefly, anybody experienced this?
Hello, my husband recently was diagnosed with ITP & given Steriods which took his count from 6 to 60 within a week or two then dropped back down.... Next IVIg which again worked for a week but now dropped to 8. His red & white cells are normal, bone marrow fine, no hiv or lupus etc just waiting for CT
Hello, my husband recently was diagnosed with ITP & given Steriods which took his count from 6 to 60 within a week or two then dropped back down.... Next IVIg which again worked for a week but now dropped to 8. His red & white cells are normal, bone marrow fine, no hiv or lupus etc just waiting for CT
Thewakey31
in
ITP Support Association
8 years ago
IBRUTINIB - for 21 months, now stopped
It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation. After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became
It's been a year or so since I last posted about my Ibrutinib progress. Here is my latest situation. After FCR failure, I was put on Ibrutinib. This did its work and I was on the miracle drug for 21 months. Then suddenly my kidney function deteriorated dramatically and my blood calcium level became
Haileybury
in
CLL Support
8 years ago
11q CLL FCR hope
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111525/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111525/
Hidden
in
CLL Support
8 years ago
11q hope
11q (16%) unmutated young and fit started FCR
11q (16%) unmutated young and fit started FCR
Hidden
in
CLL Support
8 years ago
Bendamustine and Rituximab
Hi, I will be starting BR on Dec. 2nd and would love to hear from those who have had this treatment...pros and cons. Anything I need to know? I had R-CHOP in 2007 for Richter's, looks like the remission is over.
Hi, I will be starting BR on Dec. 2nd and would love to hear from those who have had this treatment...pros and cons. Anything I need to know? I had R-CHOP in 2007 for Richter's, looks like the remission is over.
emmiekay
in
CLL Support
8 years ago
Nearly there
I'm 50 ad was diagnosed with follicular NHL stage 2 in June. I've already had 6 cycles of R-CVP and about to have 7th this Friday. The 8th and last cycle is on 16 Dec, so just finished in time for Christmas. I'll then go onto maintenance therapy with Rituximab for 2 years administered by sub-cutaneous
I'm 50 ad was diagnosed with follicular NHL stage 2 in June. I've already had 6 cycles of R-CVP and about to have 7th this Friday. The 8th and last cycle is on 16 Dec, so just finished in time for Christmas. I'll then go onto maintenance therapy with Rituximab for 2 years administered by sub-cutaneous
Hidden
in
Non Hodgkin's Lymphoma Friends
8 years ago
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