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Experiences with
Ibrutinib
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Ibrutinib and Beconase
Does anyone know if it is okay Beconase while taking
Ibrutinib
. Got prescription from GP but still wanted to check.
Does anyone know if it is okay Beconase while taking
Ibrutinib
. Got prescription from GP but still wanted to check.
Ros123
in
CLL Support
6 years ago
How to deal with Ibrutinib rash
I've been on IB for 2 months and this is the second time I've had a serious blistering rash on my legs that itches like crazy and makes it hard to wear shoes. I had this same rash last month which I thought was due to Allopurinol alone - my onc had me stop taking it and paused IB (280mg) for 5 days.
I've been on IB for 2 months and this is the second time I've had a serious blistering rash on my legs that itches like crazy and makes it hard to wear shoes. I had this same rash last month which I thought was due to Allopurinol alone - my onc had me stop taking it and paused IB (280mg) for 5 days.
bhayes84
in
CLL Support
6 years ago
Combination therapy with Ibrutinib and Venetoclax?
Does anyone know if you can get the combination of
Ibrutinib
and Venetoclax without being in a trial? We live in the US ( Wisconsin). I am reading that the two together gives a great punch to that CLL. My husband has been on
Ibrutinib
for 2 months now.
Does anyone know if you can get the combination of
Ibrutinib
and Venetoclax without being in a trial? We live in the US ( Wisconsin). I am reading that the two together gives a great punch to that CLL. My husband has been on
Ibrutinib
for 2 months now.
kathymac52
in
CLL Support
6 years ago
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** 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.
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.
Jm954
Administrator
in
CLL Support
6 years ago
Relapsed CLL?
Diagnosed with CLL in 2012, treated in clinical trial with
Ibrutinib
... in 2015 I was in remission ...during those 2+ years I was tired and had leg muscle aches, sometimes severe , but I wrote that off as fatigue due to the disease and probably the
Ibrutinib
.
Diagnosed with CLL in 2012, treated in clinical trial with
Ibrutinib
... in 2015 I was in remission ...during those 2+ years I was tired and had leg muscle aches, sometimes severe , but I wrote that off as fatigue due to the disease and probably the
Ibrutinib
.
fish61
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
Biotin while on Ibrutinib and rituximab.
Hi just wondering if anyone on
Ibrutinib
and rituximab is using increased doses of biotin to help with brittle nails and dry skin? I have just seen my consultant today and was told it was ok but just wondered if anyone out there has any experience they can share? Thanks in advance Ann
Hi just wondering if anyone on
Ibrutinib
and rituximab is using increased doses of biotin to help with brittle nails and dry skin? I have just seen my consultant today and was told it was ok but just wondered if anyone out there has any experience they can share? Thanks in advance Ann
annmcgowan
in
CLL Support
6 years ago
Encouraging results from son of Ibrutinib studies (Acalabrutinib/Calquence)
In case you need any more persuasion that we are in exiting times for the future of CLL, read this article about the exciting results of a drug which all being well may one day replace
ibrutinib
. Not every promising drug gets all the way through.
In case you need any more persuasion that we are in exiting times for the future of CLL, read this article about the exciting results of a drug which all being well may one day replace
ibrutinib
. Not every promising drug gets all the way through.
AdrianUK
in
CLL Support
6 years ago
Worried that Ibrutinib is working?
My husband has been on
Ibrutinib
for 2 months....and his neutrophils dropped from 2.3 to 1.3 and now developed a mouth sore. His lymphocytes are sky high at 24,000 but lymph nodes are small.
My husband has been on
Ibrutinib
for 2 months....and his neutrophils dropped from 2.3 to 1.3 and now developed a mouth sore. His lymphocytes are sky high at 24,000 but lymph nodes are small.
kathymac52
in
CLL Support
6 years ago
Ibrutinib
I know many are following the issue regarding NHS England's behind closed doors decision not fund treatment for CLL patients who have relapse after more than 3 years remission. Like many of you I have contacted my MP. I was not the first to do so and he was already were of it and has written to NHS England
I know many are following the issue regarding NHS England's behind closed doors decision not fund treatment for CLL patients who have relapse after more than 3 years remission. Like many of you I have contacted my MP. I was not the first to do so and he was already were of it and has written to NHS England
Mick491
in
CLL Support
6 years ago
Ibrutinib my update
I need a heart stress test before chemo or there maybe a new flare test that comes available in August which involves
Ibrutinib
and one or two other drugs. Kind regards Mick Smith
I need a heart stress test before chemo or there maybe a new flare test that comes available in August which involves
Ibrutinib
and one or two other drugs. Kind regards Mick Smith
Mick491
in
CLL Support
6 years ago
exhaustion
Been on a clinical trial (
Ibrutinib
and Venentaclax) since last November.I've experienced periodic bouts of tiredness but they have gone away in a day or so. Recently,(last 3 weeks) every day I hit a wall around 11 AM. I mean I absolutely have no energy and just want to lay down ( but not sleep).
Been on a clinical trial (
Ibrutinib
and Venentaclax) since last November.I've experienced periodic bouts of tiredness but they have gone away in a day or so. Recently,(last 3 weeks) every day I hit a wall around 11 AM. I mean I absolutely have no energy and just want to lay down ( but not sleep).
pwebster
in
CLL Support
6 years ago
Can I stop medication?
If I were to start taking
Ibrutinib
, or Dasatinib, xxxtinib... say for 6 months, and I decided to stop (arbitrarily decided) ... would I have made myself worse... than had I waited, say, 6 months? no symptoms or very slight, WW 4.5 years. 64 yo.
If I were to start taking
Ibrutinib
, or Dasatinib, xxxtinib... say for 6 months, and I decided to stop (arbitrarily decided) ... would I have made myself worse... than had I waited, say, 6 months? no symptoms or very slight, WW 4.5 years. 64 yo.
tedrog
in
CLL Support
6 years ago
First time post!
She talked to us about 2 types of treatment
Ibrutinib
or a combo of Rituximab/Bendamustine. Waiting on results from the BM test. Trying to read up on them, what are some of the markers from his tests that I need to look for? I know she said he was unmutated IGVH.
She talked to us about 2 types of treatment
Ibrutinib
or a combo of Rituximab/Bendamustine. Waiting on results from the BM test. Trying to read up on them, what are some of the markers from his tests that I need to look for? I know she said he was unmutated IGVH.
brees
in
CLL Support
6 years ago
Letter to my MP regarding funding of Ibrutinib
The Times newspaper last weekend revealed that NHS England is failing to fund patient access to
ibrutinib
despite NICE approval.
The Times newspaper last weekend revealed that NHS England is failing to fund patient access to
ibrutinib
despite NICE approval.
Ruhi9
in
CLL Support
6 years ago
NHS England are not follow NICE guidelines on other cancer drugs.
I know many are following the issue with NHS England not following NICE guidelines for the use of
Ibrutinib
, so people like myself cannot get the best treatment available.
I know many are following the issue with NHS England not following NICE guidelines for the use of
Ibrutinib
, so people like myself cannot get the best treatment available.
Mick491
in
CLL Support
6 years ago
CLL and alcoholism
So is there any point at all for a man like him to start
Ibrutinib
? What could be the consequences? Should I get mentally prepared for him to have a massive bleeding or something?
So is there any point at all for a man like him to start
Ibrutinib
? What could be the consequences? Should I get mentally prepared for him to have a massive bleeding or something?
Nia_S
in
CLL Support
6 years ago
CLLSA Response to NHS England Failing to Fund Ibrutinib in line with NICE Guidance
NHS England is currently failing to fund
ibrutinib
in line with NICE guidance.
NHS England is currently failing to fund
ibrutinib
in line with NICE guidance.
Jm954
Administrator
in
CLL Support
6 years ago
Need Help Understanding New Gene Mutation in CLL/SLL
Ibrutinib
? I'm hoping this mutation responds well to the new therapies. I have an appointment with Dr. Alessandra Ferrajoli at MD Anderson on the 18th (who I know very little about, but she was very nice at our one meeting), but that leaves 17 more days of worrying!
Ibrutinib
? I'm hoping this mutation responds well to the new therapies. I have an appointment with Dr. Alessandra Ferrajoli at MD Anderson on the 18th (who I know very little about, but she was very nice at our one meeting), but that leaves 17 more days of worrying!
PCara90
in
CLL Support
6 years ago
Lessons from five years of ibrutinib experience
Does the
ibrutinib
eventually stop working? And if FCR could have bought me a few years before
ibrutinib
have I then lost those years?
Does the
ibrutinib
eventually stop working? And if FCR could have bought me a few years before
ibrutinib
have I then lost those years?
AdrianUK
in
CLL Support
6 years ago
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