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Update after 3rd FCR!
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
After 3 rounds of FCR, my doctor said we can go ahead with plan to get BMB in September and hopefully stop treatment! Had no problems during chemo. Port was great to have. Nodes gone, blood work continues to go in right direction. Slightly tired few days after treatments, few days of loss of appetite
GMa27
in
CLL Support
6 years ago
Ibrutinib in September
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Hi ,after just under 2 years remission after FCR , I am now starting ibrutinib in September.Just wondered how long people on here have been taking this?Thanks Martin
Stacky66
in
CLL Support
6 years ago
Rituximab
Hi All, Another question. You may need to read my previous post to understand this one. My wife is going into to hospital on Wednesday for an overnight stay to have this put into her via IV. Her platelet count keeps dropping and she had a platelet transfusion last week and they were at 127 then 1
Hi All, Another question. You may need to read my previous post to understand this one. My wife is going into to hospital on Wednesday for an overnight stay to have this put into her via IV. Her platelet count keeps dropping and she had a platelet transfusion last week and they were at 127 then 1
Connorscotland
in
Hughes Syndrome APS Forum
6 years ago
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Response and Survival Rates for FCR and Ibrutinib
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
AdrianUK
in
CLL Support
6 years ago
Lupus Nephritis
I've started on 60mg steroids and MMf straight away, last month I had
Rituximab
but my Nephrologist has said that early signs are it may not have put the Nephritis into remmission.. Can anyone tell me about their experience as I naively was hoping this would magically fix everything xxx
I've started on 60mg steroids and MMf straight away, last month I had
Rituximab
but my Nephrologist has said that early signs are it may not have put the Nephritis into remmission.. Can anyone tell me about their experience as I naively was hoping this would magically fix everything xxx
MOOG144
in
LUPUS UK
6 years ago
Rituximab or Mycophenolate
Hi All, Do any of you have experience of
Rituximab
? I've found out today that my lupus/cerebral vasculitis is active again and they're looking to put me on Mycophenolate (again) or
Rituximab
. Seeing the Consultant again on Tuesday and it would be good to get the advice of lupies using
Rituximab
.
Hi All, Do any of you have experience of
Rituximab
? I've found out today that my lupus/cerebral vasculitis is active again and they're looking to put me on Mycophenolate (again) or
Rituximab
. Seeing the Consultant again on Tuesday and it would be good to get the advice of lupies using
Rituximab
.
Lorska1
in
LUPUS UK
6 years ago
CLLSA and Leukaemia Care Joint Response to NHS England regarding Ibrutinib Prescribing as per NICE TA
The draft BSH CLL treatment guidelines state: ‘Idelalisib with
rituximab
or ibrutinib monotherapy are the treatments of choice for patients with CLL who are refractory to CIT, have relapsed after CIT, or for whom re-treatment with CIT is inappropriate.’
The draft BSH CLL treatment guidelines state: ‘Idelalisib with
rituximab
or ibrutinib monotherapy are the treatments of choice for patients with CLL who are refractory to CIT, have relapsed after CIT, or for whom re-treatment with CIT is inappropriate.’
Jm954
Administrator
in
CLL Support
6 years ago
Immune system during fcr
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
Hi all I am new to this site. My partner was diagnosed 5 years ago and just begun first round of fcr. He has no real side effects up to now but I wonder are there certain times during trwatment when the immune system is most compromised. We are avoiding busy places but dont want to live in a 'bubble'
nugg9
in
CLL Support
6 years ago
Does NHS in UK cover WG for students of other countries?
Now he is on maintenance dose of
Rituximab
500mg once in six months and prednesoline 5mg daily. He has completed is undergraduate course in Bangalore,India and he wants to do his masters in UK.
Now he is on maintenance dose of
Rituximab
500mg once in six months and prednesoline 5mg daily. He has completed is undergraduate course in Bangalore,India and he wants to do his masters in UK.
nagesh
in
Vasculitis UK
6 years ago
I needed my pain meds
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Hello my Health Unlocked family!! I've been a part of this community for years. I read a lot and I post because I know you will offer me knowledge and support. I realize in the USA we are having an opioid epidemic. Terrible. I was diagnosed with CLL and stage 4 lymphoma in February 2010. My lymph nodes
Kimsome
in
Pain Concern
6 years ago
Rituximab after first infusion
Had first infusion three weeks ago.. was due second but had food poisoning. My query is feel shaky and tired. Is this a side effect and if so will it ease of
Had first infusion three weeks ago.. was due second but had food poisoning. My query is feel shaky and tired. Is this a side effect and if so will it ease of
28maggie11
in
NRAS
6 years ago
FDA Approves Venetoclax (VENCLEXTA) For CLL or SLL with or without 17p deletion, who have received at least one prior therapy
This approval is based on data from a clinical trial evaluating venetoclax in combination with
rituximab
(Rituxan). The trial compared venetoclax plus
rituximab
with bendamustine plus
rituximab
in CLL patients who had received at least one prior line of therapy.
This approval is based on data from a clinical trial evaluating venetoclax in combination with
rituximab
(Rituxan). The trial compared venetoclax plus
rituximab
with bendamustine plus
rituximab
in CLL patients who had received at least one prior line of therapy.
lankisterguy
Volunteer
in
CLL Support
6 years ago
Treated with Venetoclax with rituximab for relapsed or refractory CLL then Bloodwise need help for the NICE appraisal on 22 Jun.
The request is for a NICE appraisal of venetoclax in combination with
rituximab
for treating relapsed or refractory CLL. Ideally, we are looking for someone who has had the treatment.
The request is for a NICE appraisal of venetoclax in combination with
rituximab
for treating relapsed or refractory CLL. Ideally, we are looking for someone who has had the treatment.
Myrddin
in
CLL Support
6 years ago
Imbrevica rash
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Hello everyone! Up was taking Imbrevica for 4 months and then a rash appeared. No prednisone or topical prednisone has helped. It's almost 70 days now. My doctor discontinued it on the 15th day but it just fades and returns. My dermatologist has suggested light therapy and topical prednisone. I've
Art2018
in
CLL Support
6 years ago
ASH 2017: Dr. Richard Furman on the importance of MCL-1 in CLL (chronic lymphocytic leukemia)
From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or
rituximab
. See this on the Murano trial from ASH 2017 that combined V+
rituximab
.
From the CLL Society website: As good as venetoclax is as a single agent, there are now many studies that show even more remarkable responses occur when it is used in combination with ibrutinib or
rituximab
. See this on the Murano trial from ASH 2017 that combined V+
rituximab
.
hsouter
in
CLL Support
6 years ago
Upto date Rituximab infusion experience
As a few know I had my first
Rituximab
infusion.. it was due Tuesday but I got there and they tell me I need to have recent blood work done .. so had to postpone to today. (Groan). Let that be a warning .. make sure you get everything up to date before! So I’m 5 hours in. All ok .. so far.
As a few know I had my first
Rituximab
infusion.. it was due Tuesday but I got there and they tell me I need to have recent blood work done .. so had to postpone to today. (Groan). Let that be a warning .. make sure you get everything up to date before! So I’m 5 hours in. All ok .. so far.
Tessthomy
in
NRAS
6 years ago
Update on results
My next chapter will be six months chemo with
rituximab
and 70mg of steriods and other drugs. It's the steriods that worry me more than the chemo, I didn't cope well on 40. Anyway I'm staying positive and from now on I will be harassing doctors a lot more till they take me seriously.
My next chapter will be six months chemo with
rituximab
and 70mg of steriods and other drugs. It's the steriods that worry me more than the chemo, I didn't cope well on 40. Anyway I'm staying positive and from now on I will be harassing doctors a lot more till they take me seriously.
Lizard28
in
LUPUS UK
6 years ago
Info needed
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
I know when you have fcr your immune system is destroyed and infections are a great concern, but if you don’t have fcr and go onto the ibrutinib trials is your immune system affected in same way and if so is it affected for all the time your taking the tablets?
dandelup
in
CLL Support
6 years ago
Rituximab on Tuesday 🙄🙄🙄
I have my first ever infusion on Tuesday. Have been off embrel now for 2 weeks. It was starting to lose efficacy but now I’ve not taken at all for 2 weeks I definitely know it was still working. . I’m laid up. ! What would have happened before all these drugs .. how lucky are we??! Have taken
I have my first ever infusion on Tuesday. Have been off embrel now for 2 weeks. It was starting to lose efficacy but now I’ve not taken at all for 2 weeks I definitely know it was still working. . I’m laid up. ! What would have happened before all these drugs .. how lucky are we??! Have taken
Tessthomy
in
NRAS
6 years ago
Rituximab experiences?
My rheumy was clear that the treatment of choice is iv prednisolone, but he also mentioned
rituximab
as a possibility. Given my severe problems with steroids, I'd be glad to hear of people's experiences with
rituximab
. - effectiveness (especially in flares)?
My rheumy was clear that the treatment of choice is iv prednisolone, but he also mentioned
rituximab
as a possibility. Given my severe problems with steroids, I'd be glad to hear of people's experiences with
rituximab
. - effectiveness (especially in flares)?
whisperit
in
LUPUS UK
6 years ago
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