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Ibrutinib
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18months after FLAIR trial and hip arthritis looms....
18 months since abandoning FLAIR trial of
Ibrutinib
and Rituximab have been pretty well but the blood results are worsening and more treatment suggested soon- though I see two consultants and one wants to "nip it in the bud" (I thought it didn't make any difference) and the other thinks I am fine for
18 months since abandoning FLAIR trial of
Ibrutinib
and Rituximab have been pretty well but the blood results are worsening and more treatment suggested soon- though I see two consultants and one wants to "nip it in the bud" (I thought it didn't make any difference) and the other thinks I am fine for
romarin
in
CLL Support
6 years ago
flair trial started today
Hi feeling positive after a 5 year w&w today I started my trial of inbrutinib and venetoclax for 1st line treatment here in uk On
ibrutinib
for 8 weeks then add venetoclax over a few weeks untill I reach higher dose . Been reading posts on treatment and Im hoping for a minimum side effect journey
Hi feeling positive after a 5 year w&w today I started my trial of inbrutinib and venetoclax for 1st line treatment here in uk On
ibrutinib
for 8 weeks then add venetoclax over a few weeks untill I reach higher dose . Been reading posts on treatment and Im hoping for a minimum side effect journey
buzzybab
in
CLL Support
6 years ago
Watch and wait is over
I am going to Dana Farber and taking part of a study that combines
Ibrutinib
with standard FCR treatment. I will take the
Ibrutinib
daily for the next 2 years and finished my 1st cycle of FCR 12/19.
I am going to Dana Farber and taking part of a study that combines
Ibrutinib
with standard FCR treatment. I will take the
Ibrutinib
daily for the next 2 years and finished my 1st cycle of FCR 12/19.
Mosaicgigi
in
CLL Support
6 years ago
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Venetoclax and spleen enlarging
My husband is on an
ibrutinib
venetoclax combo trial. His spleen reduced after initial few months on
ibrutinib
but after 4 doses of Ven, it looks nearly as large as before treatment. Anyone on Ven experience something similar? Thank you.
My husband is on an
ibrutinib
venetoclax combo trial. His spleen reduced after initial few months on
ibrutinib
but after 4 doses of Ven, it looks nearly as large as before treatment. Anyone on Ven experience something similar? Thank you.
Barbshow
in
CLL America Support
6 years ago
Falling Platelets with Venetoclax
I started Venetoclax in October when
Ibrutinib
became ineffective after three years with the white blood cell count rising and the platelets falling. I had no problems with the ramp up or serious side effects on the full dose.
I started Venetoclax in October when
Ibrutinib
became ineffective after three years with the white blood cell count rising and the platelets falling. I had no problems with the ramp up or serious side effects on the full dose.
prbild
in
CLL America Support
6 years ago
Please can you tell me your symptoms and the levels of your WBC when you were started on Ibrutinib...
Today it is 183 and my consultant wants to start me on
Ibrutinib
- I am VERY nervous because it is still a fairly new treatment. Please can you tell me your symptoms and the levels of your WBC when you were started on
Ibrutinib
.
Today it is 183 and my consultant wants to start me on
Ibrutinib
- I am VERY nervous because it is still a fairly new treatment. Please can you tell me your symptoms and the levels of your WBC when you were started on
Ibrutinib
.
RitaBa
in
CLL Support
6 years ago
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
6 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
6 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
6 years ago
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
6 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
6 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
6 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
6 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
6 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
6 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
6 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
6 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
6 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
6 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
6 years ago
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