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Treatment for CSS
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
I suffer from ANCA positive vasculitis, they think a crossover of GPA/CSS and I am currently on 6 monthly Rituximab and Prednisilone but it is not controlling my symptoms. I am considering Methotrexate or Mycohenolate alongside it and was wondering if others have had success with these combinations
Maudy1
in
Vasculitis UK
9 years ago
Flair trial. Report from the field.
Flair trial. Report from the field. Hb118 White count 261. Neutrophils 2.87 Lymphocytes 239 Platelets 127 I began taking Ibrutinib (along with Allopurinol for kidney support for a month only) 2 weeks ago, Nov 2nd. and began Rituximab the next day. This was divided into two stages, gentle the
Flair trial. Report from the field. Hb118 White count 261. Neutrophils 2.87 Lymphocytes 239 Platelets 127 I began taking Ibrutinib (along with Allopurinol for kidney support for a month only) 2 weeks ago, Nov 2nd. and began Rituximab the next day. This was divided into two stages, gentle the
romarin
in
CLL Support
9 years ago
Professor Graham Hughes' Blog October 2015
October 2015 Late October. The countryside is ablaze with colour. This autumn’s technicolour display is exceptional. For the past two months I have been on the receiving end of medical treatment, having had surgery in late August. This month has brought home to me two widely known truths – firstly,
October 2015 Late October. The countryside is ablaze with colour. This autumn’s technicolour display is exceptional. For the past two months I have been on the receiving end of medical treatment, having had surgery in late August. This month has brought home to me two widely known truths – firstly,
MaryF
Administrator
in
Hughes Syndrome APS Forum
9 years ago
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FCR commences
Home from my first day of FCR. Not as bad as I anticipated and I had no reaction to the "R" aspect - (hoping this isn't a bad sign that it won't work for me!) Feeling woozy but otherwise grand. Glad to have commenced and looking forward to a good night;s sleep - fingers crossed! Buried in a fantastic
Home from my first day of FCR. Not as bad as I anticipated and I had no reaction to the "R" aspect - (hoping this isn't a bad sign that it won't work for me!) Feeling woozy but otherwise grand. Glad to have commenced and looking forward to a good night;s sleep - fingers crossed! Buried in a fantastic
KateEvaLen
in
CLL Support
9 years ago
obinutuzumab trial, do i or dont i?
Just been for my 18 month post FCR check up and was very pleased to hear that yet again i have a perfect blood count and no evidence of any mass or lumps. Then surprisingly just as i'm about to get up the consultant says I would be an ideal patient to go on a new wing of the Galactic trial that he is
Just been for my 18 month post FCR check up and was very pleased to hear that yet again i have a perfect blood count and no evidence of any mass or lumps. Then surprisingly just as i'm about to get up the consultant says I would be an ideal patient to go on a new wing of the Galactic trial that he is
grizzlebear
in
CLL Support
9 years ago
Integrating Emerging Evidence Into the Management of CLL Patients; what leading CLL experts recommend in 4 case studies
In this downloadable slideset from a symposium conducted at the NCCN 10th Annual Congress: Hematologic Malignancies™, a group of expert faculty explore the current data and provide their recommendations for 4 CLL cases: [i]1: Managing Otherwise Healthy Patients with CLL 2: Treatment Considerations for
In this downloadable slideset from a symposium conducted at the NCCN 10th Annual Congress: Hematologic Malignancies™, a group of expert faculty explore the current data and provide their recommendations for 4 CLL cases: [i]1: Managing Otherwise Healthy Patients with CLL 2: Treatment Considerations for
AussieNeil
Partner
in
CLL Support
9 years ago
The suffering while waiting for treatment is inhumane
Hi have been a member for several years, but this is my first post. I have been in Embrel for 11 years which has been a life saver, but about 3 years ago some pain and inflammation was breaking through. My Rheumy suggested I consider changing over to Ritiuximab and gave me literature to read. My
Hi have been a member for several years, but this is my first post. I have been in Embrel for 11 years which has been a life saver, but about 3 years ago some pain and inflammation was breaking through. My Rheumy suggested I consider changing over to Ritiuximab and gave me literature to read. My
whereistherealme
in
NRAS
9 years ago
FLAIR
About to start FLAIR trial on Ibrutinib and Rituximab arm. White count now 261.
About to start FLAIR trial on Ibrutinib and Rituximab arm. White count now 261.
romarin
in
CLL Support
9 years ago
International Working Group CLL 2015 (IW CLL 2015) Highlights
Hi Everyone, As the coordinator of Leukaemia Foundation Australia's National CLL Telephone Forum & Blood Cancer Support Coordinator on the Mid North Coast of NSW Australia (& registered nurse) - I am a relatively infrequent contributor to CLL Health Unlocked. However I was lucky enough to attend
Hi Everyone, As the coordinator of Leukaemia Foundation Australia's National CLL Telephone Forum & Blood Cancer Support Coordinator on the Mid North Coast of NSW Australia (& registered nurse) - I am a relatively infrequent contributor to CLL Health Unlocked. However I was lucky enough to attend
daisyruby1
in
CLL Support
9 years ago
Is phase IV chemotherapy trial good to take ?
Hello!!! I need a little bit of advice if anyone can suggest: CASE HISTORY: My mother who is 52 years old female, has recently been diagnosed for breast cancer. She had been non diabetic, and a patient of hypothyroidism and (RA) rheumatoid arithritis. A brief history of hypothyroidism and Rheumatoid
Hello!!! I need a little bit of advice if anyone can suggest: CASE HISTORY: My mother who is 52 years old female, has recently been diagnosed for breast cancer. She had been non diabetic, and a patient of hypothyroidism and (RA) rheumatoid arithritis. A brief history of hypothyroidism and Rheumatoid
anshul_15
in
Breast Cancer India
9 years ago
Ibrutinib+Rituximab
Hi All, I am due to entered onto the FLAIR trial (SLL) and if accepted will either have FCR or IR. May I kindly ask our knowledgeable community that once the initial 6 months of Rituximab is over, if I ended up on I+R would I be able to still maintain my gym protocols?. Currently and fortunately i work
Hi All, I am due to entered onto the FLAIR trial (SLL) and if accepted will either have FCR or IR. May I kindly ask our knowledgeable community that once the initial 6 months of Rituximab is over, if I ended up on I+R would I be able to still maintain my gym protocols?. Currently and fortunately i work
jackhammer
in
CLL Support
9 years ago
FCR Bound
Hi everyone. Just wanted to update you. Following getting my second opinion with a CLL specialist this week, its now certain that I'm heading for FCR. My specialist: - confirmed that I need treatment now and can no longer wait. - went through all options but felt that FCR was the right route
Hi everyone. Just wanted to update you. Following getting my second opinion with a CLL specialist this week, its now certain that I'm heading for FCR. My specialist: - confirmed that I need treatment now and can no longer wait. - went through all options but felt that FCR was the right route
KateEvaLen
in
CLL Support
9 years ago
Rituximab
Is there any one that can tell me abit about this drug?! Specialist think it's the best thing for me at the minute because now Iv got discoid as well as SLE. In very scared lol and I'm worried about how I'm going to after it and how it's all going to effect my family?! Anyone out there that could put
Is there any one that can tell me abit about this drug?! Specialist think it's the best thing for me at the minute because now Iv got discoid as well as SLE. In very scared lol and I'm worried about how I'm going to after it and how it's all going to effect my family?! Anyone out there that could put
LillyAlfie
in
LUPUS UK
9 years ago
NICE publish final guidance for idelalisib to treat CLL, moving England and Wales NHS access closer
NICE published Final Guidance today on Idelalisib for treating chronic lymphocytic leukaemia NICE technology appraisal guidance [TA359] http://www.nice.org.uk/guidance/TA359 This publishing of final guidance moves the treatment of idelalisib plus rituximab one step closer to NHS availability for England
NICE published Final Guidance today on Idelalisib for treating chronic lymphocytic leukaemia NICE technology appraisal guidance [TA359] http://www.nice.org.uk/guidance/TA359 This publishing of final guidance moves the treatment of idelalisib plus rituximab one step closer to NHS availability for England
HAIRBEAR_UK
Administrator
in
CLL Support
9 years ago
Relapsed CLL
Hello! I was initially diagnosed in 2006. Stage 4. After 8 doses of Rituximab, I have been m in remission...and have remained in total remission--- until July of this year. At my July 2015 visit to my Oncologist, we discovered that my CLL has "returned", seemingly with a vengeance! I am scheduled
Hello! I was initially diagnosed in 2006. Stage 4. After 8 doses of Rituximab, I have been m in remission...and have remained in total remission--- until July of this year. At my July 2015 visit to my Oncologist, we discovered that my CLL has "returned", seemingly with a vengeance! I am scheduled
P-klenclo
in
CLL Support
9 years ago
How Personalised Medicine is used to target variations unique to each cancer tumour
[i]"Cancer is fundamentally a disease of altered genomics – genetic material making up the structure of cells. Because these alterations are different in each person, every tumour is programmed differently with genes made up of varying sequences of DNA. This is why not everyone will respond the same
[i]"Cancer is fundamentally a disease of altered genomics – genetic material making up the structure of cells. Because these alterations are different in each person, every tumour is programmed differently with genes made up of varying sequences of DNA. This is why not everyone will respond the same
AussieNeil
Partner
in
CLL Support
9 years ago
Recentlydiagnosed
Only four weeks ago I went for a routine blood test, and the next day was contacted by my GP ,to inform me my bloods were being sent to oxford for further testing...the probability being they thought it showed I had cll? On the Friday I was confirmed it was that, and I was at stage 4 needing treatment
Only four weeks ago I went for a routine blood test, and the next day was contacted by my GP ,to inform me my bloods were being sent to oxford for further testing...the probability being they thought it showed I had cll? On the Friday I was confirmed it was that, and I was at stage 4 needing treatment
Megellen
in
CLL Support
9 years ago
Rituximab
Today I went for my Rituximab infusion. Even though I had Piriton prior to Rituximab as soon as they raised the dose I had a reaction which resulted in an Ecg and the registra saying I could not have anymore. Once my obs had settled down I was discharged and I went into my surgery for my blood test
Today I went for my Rituximab infusion. Even though I had Piriton prior to Rituximab as soon as they raised the dose I had a reaction which resulted in an Ecg and the registra saying I could not have anymore. Once my obs had settled down I was discharged and I went into my surgery for my blood test
d-creasey
in
NRAS
9 years ago
Feeling blue
On Monday at my rheumatology appointment the decision was made to stop my abatacept. If that wasn't bad enough I've actually tried everything else and I mean everything. For the last 14 months I've battled to control my immune system & it's won for now. You name it I've tried it. In the last 14 months
On Monday at my rheumatology appointment the decision was made to stop my abatacept. If that wasn't bad enough I've actually tried everything else and I mean everything. For the last 14 months I've battled to control my immune system & it's won for now. You name it I've tried it. In the last 14 months
Rachel43
in
NRAS
9 years ago
My platelets in a graph!
I thought it would be interesting to upload this graph, it shows my platelets tracked in ITP tracker app for the iPhone. The first two high peaks are IVIG, in between them I had Rituximab. The last part is Revolade and it goes up and down a bit depending on how much Prednisolone I have. The next stage
I thought it would be interesting to upload this graph, it shows my platelets tracked in ITP tracker app for the iPhone. The first two high peaks are IVIG, in between them I had Rituximab. The last part is Revolade and it goes up and down a bit depending on how much Prednisolone I have. The next stage
JasonJ
in
ITP Support Association
9 years ago
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