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6 years on Ibrutinib Should I join STATIC trial
Should I join STATIC trial after being on
Ibrutinib
for almost 6 years. I did talk to my consultant. She tells me that in UK you can go off
Ibrutinib
no more than 6 weeks without joining the trial. Should then CLL come back after 6 weeks, NICE will not permit you to go back on
Ibrutinib
.
Should I join STATIC trial after being on
Ibrutinib
for almost 6 years. I did talk to my consultant. She tells me that in UK you can go off
Ibrutinib
no more than 6 weeks without joining the trial. Should then CLL come back after 6 weeks, NICE will not permit you to go back on
Ibrutinib
.
jkl700
in
CLL Support
3 months ago
probiotics
I am taking 1 capsule per day of
Ibrutinib
. thank you
I am taking 1 capsule per day of
Ibrutinib
. thank you
Bixilon
in
CLL Support
4 months ago
Ibrutinib VS V&O
Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ago and all is well so far thank goodness. What I’m wondering is: it seems from what I’ve gathered here that V and O is fixed term and causes remission back to watch and wait while those of us on IMBRUVICA are on it indefinitely
Hi everyone I am looking for some clarity here. I started IMBRUVICA a few years ago and all is well so far thank goodness. What I’m wondering is: it seems from what I’ve gathered here that V and O is fixed term and causes remission back to watch and wait while those of us on IMBRUVICA are on it indefinitely
GettinThruIt
in
CLL Support
7 days ago
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splashsplash
UK based, CLL for 15 years, Treatments: FC, FCR,
Ibrutinib
, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
UK based, CLL for 15 years, Treatments: FC, FCR,
Ibrutinib
, Venetoclax for 2.5 years, 6 month break now back on Venetoclax
splashsplash
in
CLL Support
5 months ago
Combined Medication
I am currently on one tablet of
ibrutinib
per day for 3 months. My 3 month ends on 27th of December. I then combine
ibrutinib
with Venetoclax for the remaining 15 months. Has anyone out there been on the same combination of tablets and could share their experience with me
I am currently on one tablet of
ibrutinib
per day for 3 months. My 3 month ends on 27th of December. I then combine
ibrutinib
with Venetoclax for the remaining 15 months. Has anyone out there been on the same combination of tablets and could share their experience with me
wolfe1963
in
CLL Support
5 months ago
Understanding PET Scan Results with CLL
On
Ibrutinib
since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's transformation? As always.....Thank you!
On
Ibrutinib
since 2015 and have very thankfully done very well with basically zero problems. CT scans have showed some mild increase in nodes over the last several years. Doctor ordered a PET Scan. I have the results. What would indicated Richter's transformation? As always.....Thank you!
FlaKeys
in
CLL Support
2 months ago
WEIGHT LOSS
I have been on
ibrutinib
280 mg for almost 2 years. I only weigh 107 lbs. I have lost about 10 lbs since I started taking the drug. I eat a lot but cannot seem to maintain my weight. My numbers all look good. I know weight loss is unusual on this drug.
I have been on
ibrutinib
280 mg for almost 2 years. I only weigh 107 lbs. I have lost about 10 lbs since I started taking the drug. I eat a lot but cannot seem to maintain my weight. My numbers all look good. I know weight loss is unusual on this drug.
Glasstop
in
CLL Support
2 months ago
Flair Trial Completed
I have always been of the mindset that the 420mg
Ibrutinib
taken daily was always working to the good for my CLL and now it feels as though I have to think more positively then ever that the good will outlast the bad.
I have always been of the mindset that the 420mg
Ibrutinib
taken daily was always working to the good for my CLL and now it feels as though I have to think more positively then ever that the good will outlast the bad.
Sanphil
in
CLL Support
4 months ago
very mild discomfort in spleen area
Hi folks I have been diagnosed with CLL for two years now.I have been taking
Ibrutinib
for those two years . Just recently I have noticed some discomfort under my left rib cage/upper abdomen. Probably my spleen? Is this bad news?
Hi folks I have been diagnosed with CLL for two years now.I have been taking
Ibrutinib
for those two years . Just recently I have noticed some discomfort under my left rib cage/upper abdomen. Probably my spleen? Is this bad news?
Dyba
in
CLL Support
4 months ago
Temporary stoppage of Ibrutinib
I need to stop IB one week pre/post surgery. Today is day 3. Has anyone started feeling reversal symptoms? I’m feeling more fatigued. Hoping my lymph nodes issues don’t return. Just curious.
I need to stop IB one week pre/post surgery. Today is day 3. Has anyone started feeling reversal symptoms? I’m feeling more fatigued. Hoping my lymph nodes issues don’t return. Just curious.
CoBubby
in
CLL Support
2 months ago
Due to start on Ventoclax
Hi All, 3 months since first treatment of
Ibrutinib
and due to have 1st Venetoclax dose next week. Did anyone have any side effects with this combination. I have been asked to visit hospital weekly once I start this next cycle. I will still be on
Ibrutinib
as well.Thanks.
Hi All, 3 months since first treatment of
Ibrutinib
and due to have 1st Venetoclax dose next week. Did anyone have any side effects with this combination. I have been asked to visit hospital weekly once I start this next cycle. I will still be on
Ibrutinib
as well.Thanks.
Guinness4822
in
CLL Support
6 months ago
Petechiae
stable; normal labs; on
ibrutinib
(280) since 12/2019. I have increased petechiae on my legs; it wanes and then increases. No one has a good explanation for me. Is it the CLL? the
ibrutinib
? both? when should I be concerned? any insight would be useful.
stable; normal labs; on
ibrutinib
(280) since 12/2019. I have increased petechiae on my legs; it wanes and then increases. No one has a good explanation for me. Is it the CLL? the
ibrutinib
? both? when should I be concerned? any insight would be useful.
ElMaga
in
CLL Support
6 months ago
3-Week Ibrutinib Holiday?
However, he suggested that I take a 3-week
Ibrutinib
holiday in order to see how my body responds to the absence of drugs, and then restart again. Any thoughts or experience on taking a "holiday" and then restarting?
However, he suggested that I take a 3-week
Ibrutinib
holiday in order to see how my body responds to the absence of drugs, and then restart again. Any thoughts or experience on taking a "holiday" and then restarting?
hhk50
in
CLL Support
5 months ago
Ibrutinib +venetoclax
Can anyone please clarify which countries have approved and now fund the use of this combination as a fixed term first-line treatment for CLL? 🙏Is it FDA approved?
Can anyone please clarify which countries have approved and now fund the use of this combination as a fixed term first-line treatment for CLL? 🙏Is it FDA approved?
Kiwidi
in
CLL Support
5 months ago
My Father died
CLL i got a lot of optimistic response and answers After my father had TP53 mutation with 17p Deletion i was told that my father wont respond to chemotherapy anymore i told my father that but his doctor insisted , a strong dose, it took 2 weeks my father was in pain All over his body he added
ibrutinib
CLL i got a lot of optimistic response and answers After my father had TP53 mutation with 17p Deletion i was told that my father wont respond to chemotherapy anymore i told my father that but his doctor insisted , a strong dose, it took 2 weeks my father was in pain All over his body he added
ibrutinib
Ornate2001
in
CLL Support
16 days ago
Zanubrutinib and hair loss?
I'm not sure if it was the
Ibrutinib
alone or the comination of
Ibrutinib
and Venetoclax. I'm wondering if anyone here on Zanubrutinib is experiencing that particular side effect.
I'm not sure if it was the
Ibrutinib
alone or the comination of
Ibrutinib
and Venetoclax. I'm wondering if anyone here on Zanubrutinib is experiencing that particular side effect.
fell
in
CLL Support
5 months ago
Atorvastatin and Ibrutinib
Just look for any others on Atorvastatin and
Ibrutinib
? Been advised that I should go ahead after 5 years of delaying. I have put a question into my haematology team as to the acceptability of Atorvastatin, I know certain statins should not be taken with
Ibrutinib
.
Just look for any others on Atorvastatin and
Ibrutinib
? Been advised that I should go ahead after 5 years of delaying. I have put a question into my haematology team as to the acceptability of Atorvastatin, I know certain statins should not be taken with
Ibrutinib
.
RobertCLL
in
CLL Support
7 months ago
Possibly trial
I'm 17p and
ibrutinib
is my only treatment to date. Any thoughts?
I'm 17p and
ibrutinib
is my only treatment to date. Any thoughts?
cartwheels
in
CLL Support
6 months ago
GOODAY
I have been taking
Ibrutinib
for over five years and my bloods are fine. Recently I have started coughing up phlegm in the morning yet no coughing or breathing issues. Recently got sore eyes and a dry mouth that I am taking medication for and is now improving.
I have been taking
Ibrutinib
for over five years and my bloods are fine. Recently I have started coughing up phlegm in the morning yet no coughing or breathing issues. Recently got sore eyes and a dry mouth that I am taking medication for and is now improving.
fossicker
in
CLL Support
4 months ago
stopping ibrutinib after 5 years
hi - just wondering if anyone else has stopped
ibrutinib
and how things are going for them? I stopped
ibrutinib
12 months ago because of severe daily muscle and bone pain .
hi - just wondering if anyone else has stopped
ibrutinib
and how things are going for them? I stopped
ibrutinib
12 months ago because of severe daily muscle and bone pain .
Prettywombat
in
CLL Support
7 months ago
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