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Ibrutinib
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Sore fingers.
I have been on
Ibrutinib
since June for my SLL. Have had various side effects that have come n gone have now got very sore finger tips. Anybody else experienced this? If so did it go quickly . Thanks. Bes5 wishes and good health to all in 2018
I have been on
Ibrutinib
since June for my SLL. Have had various side effects that have come n gone have now got very sore finger tips. Anybody else experienced this? If so did it go quickly . Thanks. Bes5 wishes and good health to all in 2018
Tigger53
in
CLL Support
7 years ago
Clinical Trial
Hi guys, I've been selected for the
Ibrutinib
/Venetoclax trial. I'm just waiting to be "randomised" for whatever treatment I end up with. Must admit I'm getting a little bit anxious about it all.
Hi guys, I've been selected for the
Ibrutinib
/Venetoclax trial. I'm just waiting to be "randomised" for whatever treatment I end up with. Must admit I'm getting a little bit anxious about it all.
Daveyo
in
CLL Support
7 years ago
Tidings of Joy this happy time
So well done
Ibrutinib
now nearly six years on the drug. My consultant thinks that my not having previous treatment may be the way forward for others, of course my 13q marker may also be part of it.
So well done
Ibrutinib
now nearly six years on the drug. My consultant thinks that my not having previous treatment may be the way forward for others, of course my 13q marker may also be part of it.
Berrytog
in
CLL Support
7 years ago
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Venetoclax and fatigue
Greetings fellow CLLers, I was on
ibrutinib
for 3 years and stopped due to fatigue, which disappeared after 3 weeks or so off the drug. I started venetoclax 14 months ago and have done very well re: ALC and no real fatigue - until the past few months.
Greetings fellow CLLers, I was on
ibrutinib
for 3 years and stopped due to fatigue, which disappeared after 3 weeks or so off the drug. I started venetoclax 14 months ago and have done very well re: ALC and no real fatigue - until the past few months.
benmarto
in
CLL Support
7 years ago
Stem cell transplant
Preparing to go onto a trial with
Ibrutinib
and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good.
Preparing to go onto a trial with
Ibrutinib
and Venetoclax. Glands swollen and large all over. I am 11q unmutated lymphocytes trending upwards at 50 and last month were 33. Hb going slightly downwards but not bad. Everything else good.
DebLeeCox
in
CLL Support
7 years ago
Urgent question: low platelets
Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on
ibrutinib
for 9 months, scheduled for stem cell transplant in January.
Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on
ibrutinib
for 9 months, scheduled for stem cell transplant in January.
Glees
in
CLL Support
7 years ago
Ibrutinib 7 month's in
treatment my belly button was poking out it has gone back in but not like it used to be and I constantly watch it as I say I have put some weight on but my belly still seems big (well to me) could my internal nodes still be enlarged I get worried that if I see my belly poking out it might be the start of
ibrutinib
treatment my belly button was poking out it has gone back in but not like it used to be and I constantly watch it as I say I have put some weight on but my belly still seems big (well to me) could my internal nodes still be enlarged I get worried that if I see my belly poking out it might be the start of
ibrutinib
cartwheels
in
CLL Support
7 years ago
Heat Shock Protein Inhibitor (SNX-5422) and Ibrutinib
Don’t forget
ibrutinib
combined with a Heat Shock Protein Inhibitor (SNX-5422). There is a clinical trial going on now. (ID#NCT02973399). Also, Cart T-Cell Therapy combined with
ibrutinib
.
Don’t forget
ibrutinib
combined with a Heat Shock Protein Inhibitor (SNX-5422). There is a clinical trial going on now. (ID#NCT02973399). Also, Cart T-Cell Therapy combined with
ibrutinib
.
DaleFL
in
CLL Support
7 years ago
Armagedon or false alarm?
Some of our drugs come from Europe, some from America, manufactured under license in China in the case of
Ibrutinib
. Some of us are are recieving treatment via the NHS, others via trials.
Some of our drugs come from Europe, some from America, manufactured under license in China in the case of
Ibrutinib
. Some of us are are recieving treatment via the NHS, others via trials.
Berrytog
in
CLL Support
7 years ago
burning sensation on my scalp
Then I started
Ibrutinib
. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains in my body. I have had a nerve block that did not help. I hope that someone of you recognizes this and has a solution for me.
Then I started
Ibrutinib
. It has gone well for a while but since a month I have a very burning sensation on my scalp, and stitches and hair loss. Also nerve pains in my body. I have had a nerve block that did not help. I hope that someone of you recognizes this and has a solution for me.
jroon08
in
CLL Support
7 years ago
Leg cramps
My husband has successfully been on 2 tablets of
IBRUTINIB
daily since late September with minimal side effects. Every so often, he has leg cramps. Sometimes worse than others. Tonight he had very severe cramps in both legs at the same time.
My husband has successfully been on 2 tablets of
IBRUTINIB
daily since late September with minimal side effects. Every so often, he has leg cramps. Sometimes worse than others. Tonight he had very severe cramps in both legs at the same time.
Farrpottery
in
CLL Support
7 years ago
Trying to help an acquaintance who lives close to the Black Sea,in Georgia, who has just been told that her CLL has turned into B-PLL.
I mentioned to her that I thought that venetoclax and
Ibrutinib
"might" be preferred treatments. Any suggestions that might be helpful,as to what opportunities might be available to her? Thank you.
I mentioned to her that I thought that venetoclax and
Ibrutinib
"might" be preferred treatments. Any suggestions that might be helpful,as to what opportunities might be available to her? Thank you.
jettyguy1
in
CLL Support
7 years ago
Ibrutinib
Radiation from the drug
ibrutinib
does it harm the people I live with?
Radiation from the drug
ibrutinib
does it harm the people I live with?
unun
in
CLL Support
7 years ago
Just Curious about Drinking Alcohol while taking Ibrutinib
Just wondering. 3 weeks ago, I started
Ibrutinib
treatments and everything seems to be going as planned ( no side effects of any kind). I guess my question is regarding having anything to drink (wine) while I'm under treatment? I really miss having a glass of wine with my wife at night.
Just wondering. 3 weeks ago, I started
Ibrutinib
treatments and everything seems to be going as planned ( no side effects of any kind). I guess my question is regarding having anything to drink (wine) while I'm under treatment? I really miss having a glass of wine with my wife at night.
pwebster
in
CLL Support
7 years ago
CLL Treatments using Ibrutinib
Started
Ibrutinib
in 2015 and had to stop after 3 months to remove an unrelated Melanoma. Went back on
Ibrutinib
in Aug 2017. Experiencing mouth sores but using baking soda helped. Also having bouts of Thrush, but Nystatin helps a lot. Now
Ibrutinib
not working well enough.
Started
Ibrutinib
in 2015 and had to stop after 3 months to remove an unrelated Melanoma. Went back on
Ibrutinib
in Aug 2017. Experiencing mouth sores but using baking soda helped. Also having bouts of Thrush, but Nystatin helps a lot. Now
Ibrutinib
not working well enough.
jaysearch
in
CLL Support
7 years ago
FCR + Ibrutinib trial
I have the opportunity to participate in a trial that combines
ibrutinib
with FCR for 6 months and after that ends i would continue to take the
ibrutinib
for 2 years.
I have the opportunity to participate in a trial that combines
ibrutinib
with FCR for 6 months and after that ends i would continue to take the
ibrutinib
for 2 years.
Haesl
in
CLL Support
7 years ago
Feeling better and looking better
Has anybody on
ibrutinib
for cll had cosmetic enhancements like Botox, facial fillers , ultherapy etc.. as age, disease and treatment continue, looking better can improve how we deal with all of it.
Has anybody on
ibrutinib
for cll had cosmetic enhancements like Botox, facial fillers , ultherapy etc.. as age, disease and treatment continue, looking better can improve how we deal with all of it.
Rogerinhorn2015
in
CLL Support
7 years ago
Time of taking Ibrutinib
Hello folks, my partner has started taking
Ibrutinib
. He is taking it in the morning. We wanted to know if there is a certain amount of time between when he takes his pills and when he starts eating. At the moment, he takes his pills and usually has something to eat 1/2hr later.
Hello folks, my partner has started taking
Ibrutinib
. He is taking it in the morning. We wanted to know if there is a certain amount of time between when he takes his pills and when he starts eating. At the moment, he takes his pills and usually has something to eat 1/2hr later.
pollyg2016
in
Non Hodgkin's Lymphoma Friends
7 years ago
Emerging CLL treatments beyond Imbruvica and Venetoclax. I am not an expert - though. Feel free to copy , edit and repost.
clinicaltrials.gov/ct2/show/NCT02965092 4) CAR-T with ROR1 as a target https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4288622/ 5) CAR-NK https://www.mdanderson.org/publications/oncolog/may-june-2017/chimeric-antigen-receptordirected-natural-killer-cells-for-b-cel.html 6) Evaluate CC-122 in Combination With
Ibrutinib
clinicaltrials.gov/ct2/show/NCT02965092 4) CAR-T with ROR1 as a target https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4288622/ 5) CAR-NK https://www.mdanderson.org/publications/oncolog/may-june-2017/chimeric-antigen-receptordirected-natural-killer-cells-for-b-cel.html 6) Evaluate CC-122 in Combination With
Ibrutinib
Hoffy
in
CLL Support
7 years ago
Sex Life
Hello, my partner is on
Ibrutinib
(also known as Imbruvica) - started one week ago. I have two questions. 1. Will the drug affect our sex life? Do we need to take extra precautions eg. Condoms? 2.
Hello, my partner is on
Ibrutinib
(also known as Imbruvica) - started one week ago. I have two questions. 1. Will the drug affect our sex life? Do we need to take extra precautions eg. Condoms? 2.
pollyg2016
in
CLL Support
7 years ago
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