Search
Search
About
Log in
Join
Experiences with
Ibrutinib
Posts
Communities
1,999 public posts
Filter results
Anxious
I am 70 ys old and have Medicare A&B, an AARP Medicare Supplement and a Humana Part D prescription plan.I was just told I am supposed to start taking
Ibrutinib
treatment for my CLL. When MD Anderson checked , my co-pay will be $2,763 A MONTH!
I am 70 ys old and have Medicare A&B, an AARP Medicare Supplement and a Humana Part D prescription plan.I was just told I am supposed to start taking
Ibrutinib
treatment for my CLL. When MD Anderson checked , my co-pay will be $2,763 A MONTH!
pwebster
in
CLL Support
7 years ago
15th day on Ibrutinib and some side effects.
Well it's been 15 days since I started IB on the clinical trial with Venetoclax . I have had several minor side effects so far that are worth mentioning. I have experienced.. Occasionall headaches.. Muscle cramps.. Bone pain..in knees.. Hands... And a rash just appeared on my back and chest. It doesn't
Well it's been 15 days since I started IB on the clinical trial with Venetoclax . I have had several minor side effects so far that are worth mentioning. I have experienced.. Occasionall headaches.. Muscle cramps.. Bone pain..in knees.. Hands... And a rash just appeared on my back and chest. It doesn't
BCTexas
in
CLL Support
7 years ago
Flu jab and ibrutinib
Flu jab and
ibrutinib
Off to get my flu jab this morning anyone else on
ibrutinib
had the jab. Usually get one every year but this is the 1st time I will have had whilst on treatment so a little nervous
Flu jab and
ibrutinib
Off to get my flu jab this morning anyone else on
ibrutinib
had the jab. Usually get one every year but this is the 1st time I will have had whilst on treatment so a little nervous
cartwheels
in
CLL Support
7 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Starting Allopurinol with Ibrutinib?
He has enlarged nodes on his neck, his spleen is enlarged, and his WBC has gone from 42,000 to 72,000 in less than a month and 91% are lymphocytes so they are rushing to start
Ibrutinib
.
He has enlarged nodes on his neck, his spleen is enlarged, and his WBC has gone from 42,000 to 72,000 in less than a month and 91% are lymphocytes so they are rushing to start
Ibrutinib
.
CLLdaughters
in
CLL Support
7 years ago
New possibilities in the fight against NHL
http://www.onclive.com/web-exclusives/umbralisib-ublituximab-
ibrutinib
-triplet-reaches-100-response-in-cll This sounds promising. Worth checking out. Since I'm a twice relapsed patient, I may very well end up trying something like this.
http://www.onclive.com/web-exclusives/umbralisib-ublituximab-
ibrutinib
-triplet-reaches-100-response-in-cll This sounds promising. Worth checking out. Since I'm a twice relapsed patient, I may very well end up trying something like this.
R16728
in
Non Hodgkin's Lymphoma Friends
7 years ago
Cost assistance for Ibrutinib in USA
Been told I need to start
Ibrutinib
ASAP. Problem is, the monthly cost will be more than my fixed income. Does anyone know if there are any programs available that could help defray the cost? [i]Title changed to improve responses - Admin[/i]
Been told I need to start
Ibrutinib
ASAP. Problem is, the monthly cost will be more than my fixed income. Does anyone know if there are any programs available that could help defray the cost? [i]Title changed to improve responses - Admin[/i]
pwebster
in
CLL Support
7 years ago
getting
How to pay for
ibrutinib
my doctor said big drug companies help, Just wondering if anyone had exsperience with this also, how do they determine when they will help? In other words what do they consider as income? Do they consider your life insurance Any info would be appreciated, Janet
How to pay for
ibrutinib
my doctor said big drug companies help, Just wondering if anyone had exsperience with this also, how do they determine when they will help? In other words what do they consider as income? Do they consider your life insurance Any info would be appreciated, Janet
Janmae
in
CLL Support
7 years ago
Raising levels of LDH in CLL
My mother seems to be doing well on
Ibrutinib
. She is 17p deletion and trysome 12, her levels of WBC were from 130 when started treatment to 16 in 4 months, but we have a concern about her LDH that has been raising from 350 to 450 and now she is 530 during the last 3 months.
My mother seems to be doing well on
Ibrutinib
. She is 17p deletion and trysome 12, her levels of WBC were from 130 when started treatment to 16 in 4 months, but we have a concern about her LDH that has been raising from 350 to 450 and now she is 530 during the last 3 months.
nicolas_12
in
CLL Support
7 years ago
My journey on FLAIR (Ibrutinib & Rituximab)
The main side effect I have had, possibly from Rituximab or
Ibrutinib
has been joint pain which occurs in various parts of the body for a day or two and then disappears.
The main side effect I have had, possibly from Rituximab or
Ibrutinib
has been joint pain which occurs in various parts of the body for a day or two and then disappears.
Naboo
in
CLL Support
7 years ago
Stopped Ibrutinib - Side Effects Continue
Now I was only on
Ibrutinib
for 12 days and have been off one week but side effects persist - severe headaches and chest pain. Feels like pressure/tightness on chest which can go to my back and up into head and can increase with just breathing. Its scary.
Now I was only on
Ibrutinib
for 12 days and have been off one week but side effects persist - severe headaches and chest pain. Feels like pressure/tightness on chest which can go to my back and up into head and can increase with just breathing. Its scary.
Roydeane
in
CLL Support
7 years ago
Nail and Hair Changes on Ibrutinib
A similar toxicity has been also reported in patients treated with
ibrutinib
. Nail changes could be due to the
ibrutinib
-induced disruption of disulfide bonds between cysteines, which is critical for nail hardness.
A similar toxicity has been also reported in patients treated with
ibrutinib
. Nail changes could be due to the
ibrutinib
-induced disruption of disulfide bonds between cysteines, which is critical for nail hardness.
Cllcanada
Top Poster CURE Hero
in
CLL Support
7 years ago
Ibrutinib Week 1
So I started my 1st dose last Mon evening and have been taking 2 pills every night at 10pm. I make sure to stop eating at 8pm, so the drug is not directly interacting with food. On Tuesday I felt clearheaded that I had not experienced in 6 months+. As that clearheadedness stayed throughout the week
So I started my 1st dose last Mon evening and have been taking 2 pills every night at 10pm. I make sure to stop eating at 8pm, so the drug is not directly interacting with food. On Tuesday I felt clearheaded that I had not experienced in 6 months+. As that clearheadedness stayed throughout the week
Mellyjake
in
CLL Support
7 years ago
Good News from the Doctor Venetoclax is working!
I can truly say that I found the courage to confront my doctor about the choice of treatment options, (he was pushing
Ibrutinib
and I wanted Venetoclax) and recently about lowering the the dosage due to side effects, all because of the great information I received here!
I can truly say that I found the courage to confront my doctor about the choice of treatment options, (he was pushing
Ibrutinib
and I wanted Venetoclax) and recently about lowering the the dosage due to side effects, all because of the great information I received here!
ReneeSusan
in
CLL America Support
7 years ago
Ibrutinib Pain in Chest
I been on
Ibrutinib
for 2 weeks now. I know I am in good hands with Dr Oconner at Columbia in New York and and also met with Dr Bryd at Ohio State who is there when i need him.
I been on
Ibrutinib
for 2 weeks now. I know I am in good hands with Dr Oconner at Columbia in New York and and also met with Dr Bryd at Ohio State who is there when i need him.
Roydeane
in
CLL Support
7 years ago
Sleep walking into trouble
My care is complicated with the AIHA managed by local consultant and CLL by haemato-oncologist (
ibrutinib
stopped after nearly three years in summer because of early peripheral neuropathy; bone marrow showed incomplete remission - down from 90% to less than 20% lymphocytes) After my cautionary tale,
My care is complicated with the AIHA managed by local consultant and CLL by haemato-oncologist (
ibrutinib
stopped after nearly three years in summer because of early peripheral neuropathy; bone marrow showed incomplete remission - down from 90% to less than 20% lymphocytes) After my cautionary tale,
charliegirl
in
CLL Support
7 years ago
First day on Clinical Trial Ibrutinib / Venetoclax
I started my first round today on IB. It's been 2 years since I was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried the natural path but I soon realized that although I was keeping my CLL in check I wouldn't be able to maintain this forever. I also received
I started my first round today on IB. It's been 2 years since I was diagnosed with CLL. I have been on W&W up until now. At first I refused treatment and tried the natural path but I soon realized that although I was keeping my CLL in check I wouldn't be able to maintain this forever. I also received
BCTexas
in
CLL Support
7 years ago
Ibrutinib & neuropathy?
Has anyone else had experience with
ibrutinib
and neuropathy?
Has anyone else had experience with
ibrutinib
and neuropathy?
Glees
in
CLL Support
7 years ago
Can Ibrutinib affect the vagus nerve and digestion?
So glad for you. Moms scan from September 27 shows no sign of recurrent or new mantle cell lymphoma. For past few weeks though has had nausea more loss of hearing and fatigue. Dr does not think imbruvica causing these, but I’m wondering if it can affect the vagus nerve and the ? Gastroparesis. The first
So glad for you. Moms scan from September 27 shows no sign of recurrent or new mantle cell lymphoma. For past few weeks though has had nausea more loss of hearing and fatigue. Dr does not think imbruvica causing these, but I’m wondering if it can affect the vagus nerve and the ? Gastroparesis. The first
9229Schaeffer
in
CLL Support
7 years ago
Imbruvica for Australians
Just heard on the news this am that
ibrutinib
will be available on pbs in oz from December 1st. From $100,000 per year to 38.80 per month or $6.30 for seniors etc. our prime minister made this announcement at Sydney's Royal north Shore hospital. Good news indeed Sheila in Freo
Just heard on the news this am that
ibrutinib
will be available on pbs in oz from December 1st. From $100,000 per year to 38.80 per month or $6.30 for seniors etc. our prime minister made this announcement at Sydney's Royal north Shore hospital. Good news indeed Sheila in Freo
Elliot43
in
CLL Support
7 years ago
Atrial Fibrillation after 100 days on Ibrutinib
I’ve been on
Ibrutinib
for 100 days with almost no side effects. Today, when I was being prepared for cataract surgery, it was cancelled because atrial Fibrillation was detected. I hear that probably I will be taken off
Ibrutinib
which disappoints me since it has been working so well..
I’ve been on
Ibrutinib
for 100 days with almost no side effects. Today, when I was being prepared for cataract surgery, it was cancelled because atrial Fibrillation was detected. I hear that probably I will be taken off
Ibrutinib
which disappoints me since it has been working so well..
Samka
in
CLL Support
7 years ago
1
...
74
75
76
...
100
Next page
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1909 results
CLL America Support
29 results
Non Hodgkin's Lymphoma Friends
29 results
View top 10 communities
Sort by
Most Relevant
Newest