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Ibrutinib
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The Final Countdown
So, it appears
Ibrutinib
may not work for me. My oncologist said that CAR T therapy have been approved for people who are in FCR and
Ibrutinib
relapse. Does anybody share my experience or will I be dead in 6 months to a year?
So, it appears
Ibrutinib
may not work for me. My oncologist said that CAR T therapy have been approved for people who are in FCR and
Ibrutinib
relapse. Does anybody share my experience or will I be dead in 6 months to a year?
pilantd
in
CLL Support
7 years ago
Ibrutinib
I am new to this site.Over the years, since I was first diagnosed with CLL, I have had two treatments with chemo, this time I was put on
Ibrutinib
. I suffered with extreme dizzy spells and then loss of balance. After being told to stop I am now on a reduced dose to see if I can tolerate it.
I am new to this site.Over the years, since I was first diagnosed with CLL, I have had two treatments with chemo, this time I was put on
Ibrutinib
. I suffered with extreme dizzy spells and then loss of balance. After being told to stop I am now on a reduced dose to see if I can tolerate it.
Cardiffborn
in
CLL Support
7 years ago
White blood cell count
I am also taking
ibrutinib
three tablets a day. Is this result something I should be concerned about? Thanking you in anticipation.
I am also taking
ibrutinib
three tablets a day. Is this result something I should be concerned about? Thanking you in anticipation.
Broadbent
in
CLL Support
7 years ago
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"there has been a further reduction in the presence of the disease and limited evidence of any residual disease"
No more blood thinning injections, and he also said that I would not need chemo again but would have
Ibrutinib
if I needed more treatment in the future. WBC still low so got to be careful, but definitely a good week.
No more blood thinning injections, and he also said that I would not need chemo again but would have
Ibrutinib
if I needed more treatment in the future. WBC still low so got to be careful, but definitely a good week.
MattGGibson
in
CLL Support
7 years ago
47 years old, starting Ibrutinib this Monday
My Onc helped navigate my health insurance and my first batch of
Ibrutinib
arrives tomorrow. I decided to wait until Mon night to start as my kids have a lot activities this weekend and since I'll be on this forever, what's a few days wait.
My Onc helped navigate my health insurance and my first batch of
Ibrutinib
arrives tomorrow. I decided to wait until Mon night to start as my kids have a lot activities this weekend and since I'll be on this forever, what's a few days wait.
Mellyjake
in
CLL Support
7 years ago
REMISSION !!!!!!!
my husband has been on
Ibrutinib
for three years and one week, during that time he has been off and on the driug several times due to surgery/clinical procedures.
my husband has been on
Ibrutinib
for three years and one week, during that time he has been off and on the driug several times due to surgery/clinical procedures.
lartington
in
CLL Support
7 years ago
Long term treatment for 11q
One of the newly drugs like
Ibrutinib
. The problem that I'm finding is that this drug you have to take for the rest of your life, which isn't an option for me since I am so young. Money is definitely a reason, but is there any concerns with taking it long term (toxicity)?
One of the newly drugs like
Ibrutinib
. The problem that I'm finding is that this drug you have to take for the rest of your life, which isn't an option for me since I am so young. Money is definitely a reason, but is there any concerns with taking it long term (toxicity)?
Cpt_N
in
CLL Support
7 years ago
Initial appointment/UCSD Dr Michael Choi
Began
Ibrutinib
as first line (?) treatment very soon after. Any suggestions as to questions I should ask, or information I should obtain at this first appointment? Thanks, Sue
Began
Ibrutinib
as first line (?) treatment very soon after. Any suggestions as to questions I should ask, or information I should obtain at this first appointment? Thanks, Sue
SueTG
in
CLL Support
7 years ago
Rashes with Ibrutinib use
He has been on
Ibrutinib
for almost 3 weeks now. He takes 2 pills at night. His strength has returned. His fatigue is gone. He no longer sleeps 15 hrs a day. His legs no longer swollen. He has energy to go to his shop and change oil in the four wheeler.
He has been on
Ibrutinib
for almost 3 weeks now. He takes 2 pills at night. His strength has returned. His fatigue is gone. He no longer sleeps 15 hrs a day. His legs no longer swollen. He has energy to go to his shop and change oil in the four wheeler.
Farrpottery
in
CLL Support
7 years ago
Watch and wait is awful
I am now on
ibrutinib
for about 9 months everything counts spleen sweats etc. all much much better. There are some side effects for me(not all get same) not awful mostly handled with meds as needed but wbc 68k down from 175k platelets up from70 to 100.
I am now on
ibrutinib
for about 9 months everything counts spleen sweats etc. all much much better. There are some side effects for me(not all get same) not awful mostly handled with meds as needed but wbc 68k down from 175k platelets up from70 to 100.
NANACAROL
in
CLL Support
7 years ago
Ibrutinib doing its job well
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
It's been a couple of months since I last posted and all is going well. WBC is coming down nicely and platelets, haemoglobin etc all in the healthy range. Joint pain is less often and I know that it will pass within a couple of days. Picking up on my exercise walking a local reservoir at pace (7.5k
KAS8
in
CLL Support
7 years ago
High biotin doses may interfere with some SERUM blood tests, e.g. thyroid, anaemia. Those on Ibrutinib please note!
[u]Biotin supplements are commonly taken to reduce nail splitting for those on
Ibrutinib
therapy and it is regularly taken for other reasons[/u].
[u]Biotin supplements are commonly taken to reduce nail splitting for those on
Ibrutinib
therapy and it is regularly taken for other reasons[/u].
AussieNeil
Partner
in
CLL Support
7 years ago
Cracked nails
Hi everyone, am on
Ibrutinib
and suffering with splitting nails. Any ideas for prevention.?
Hi everyone, am on
Ibrutinib
and suffering with splitting nails. Any ideas for prevention.?
Broadbent
in
CLL Support
7 years ago
Is watch and wait still the best early option
With the approval of
Ibrutinib
and other non chemo break throughs is there any support for starting these earlier versus the watch and wait?
With the approval of
Ibrutinib
and other non chemo break throughs is there any support for starting these earlier versus the watch and wait?
Superdad3
in
CLL Support
7 years ago
Neutrophil Level Meaning
At this point I know I have cll with 17p deletion and have been taking
ibrutinib
for about 4 months now. I am still trying to understand all of the abnormalities in my blood test results . Today neutrophil levels are a big puzzle to me.
At this point I know I have cll with 17p deletion and have been taking
ibrutinib
for about 4 months now. I am still trying to understand all of the abnormalities in my blood test results . Today neutrophil levels are a big puzzle to me.
Storygirl
in
CLL Support
7 years ago
Role of Imbruvica (ibrutinib) ...Dr. Wierda
https://youtu.be/Rj-7m-AQK9I
https://youtu.be/Rj-7m-AQK9I
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
side effects of ibrutinib - bladder pressure?
I am finishing 8 weeks with
ibrutinib
my white blood cells have come down a lot. but I have some adverse effects. Now I am worried about the pressure that I feel in my bladder. Has anyone experienced this symptom? may have to do with tumor lysis?
I am finishing 8 weeks with
ibrutinib
my white blood cells have come down a lot. but I have some adverse effects. Now I am worried about the pressure that I feel in my bladder. Has anyone experienced this symptom? may have to do with tumor lysis?
Bixilon
in
CLL Support
7 years ago
Question about Platelets and Liver markers post FR
If not then may switch to
Ibrutinib
or continue with FR if my platelets recover. My neutrophils are good (2.85). My question is that I have noticed my Liver markers have changed: Billirubin is up to 22 (range is 8-22) LDH down to 136 (range is 140-271) Does any one know what this is indicative of?
If not then may switch to
Ibrutinib
or continue with FR if my platelets recover. My neutrophils are good (2.85). My question is that I have noticed my Liver markers have changed: Billirubin is up to 22 (range is 8-22) LDH down to 136 (range is 140-271) Does any one know what this is indicative of?
naddude
in
CLL Support
7 years ago
Down
Am on
Ibrutinib
and everything is going well. But depression has struck. I cannot believe how depressed I am. Any answers out there.
Am on
Ibrutinib
and everything is going well. But depression has struck. I cannot believe how depressed I am. Any answers out there.
Broadbent
in
CLL Support
7 years ago
CLL with p53,17 deletion
Our Doctor has ordered
Ibrutinib
for him to begin 2 tabs daily this week. Does insurance and Medicare recognize this as chemo? Is it covered? If you've taken
Ibrutinib
, we would appreciate hearing from you. Sincerely, farrpottery
Our Doctor has ordered
Ibrutinib
for him to begin 2 tabs daily this week. Does insurance and Medicare recognize this as chemo? Is it covered? If you've taken
Ibrutinib
, we would appreciate hearing from you. Sincerely, farrpottery
Farrpottery
in
CLL Support
7 years ago
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