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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
2 months ago
Considering getting a few dental implants
I have been on
Ibrutinib
for about 5+ years. Most numbers are in the normal range with the exception of my ALC which hovers around 5 -7.
I have been on
Ibrutinib
for about 5+ years. Most numbers are in the normal range with the exception of my ALC which hovers around 5 -7.
Bell53
in
CLL Support
30 days ago
Hearing Problem
Hi Everyone Interested to know has anyone had trouble with their hearing while taking
Ibrutinib
and Venetoclax. I'm around 6 months into taking the combined tablets, around 1 month ago I noticed a difference with my hearing, never had a problem with my hearing before I was diagnosed with CLL.
Hi Everyone Interested to know has anyone had trouble with their hearing while taking
Ibrutinib
and Venetoclax. I'm around 6 months into taking the combined tablets, around 1 month ago I noticed a difference with my hearing, never had a problem with my hearing before I was diagnosed with CLL.
wolfe1963
in
CLL Support
2 months ago
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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
5 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
3 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
3 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
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
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
1 month 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
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
6 months 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
4 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
5 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
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
3 months ago
STATIC dilemma
I am moving to the Static trial where I will be off or on
ibrutinib
through choice or randomisation. All patients on
ibrutinib
can choose to stay on it and still enter the trial on the on
ibrutinib
arm.
I am moving to the Static trial where I will be off or on
ibrutinib
through choice or randomisation. All patients on
ibrutinib
can choose to stay on it and still enter the trial on the on
ibrutinib
arm.
annmcgowan
in
CLL Support
7 months ago
Ibrutinib resistance
Resistance to IB after 6 yrs.. mutations c481 & Plcg2. Still on IB until progression. 13q, zap 70. What's next? No definitive answers from Onco/Hema Doc except watch & wait. Very anxious.
Resistance to IB after 6 yrs.. mutations c481 & Plcg2. Still on IB until progression. 13q, zap 70. What's next? No definitive answers from Onco/Hema Doc except watch & wait. Very anxious.
Rogerinhorn2015
in
CLL Support
6 months ago
stomach pains, on ibrutinib and ventoclax
morning all, wanted to ask has anyone else had problems with stomach issues whilst on
ibrutinib
and Ventoclax
morning all, wanted to ask has anyone else had problems with stomach issues whilst on
ibrutinib
and Ventoclax
Givemestrength23
in
CLL Support
6 months ago
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