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Ibrutinib
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7 month on Ibrutinib
Low dose of
Ibrutinib
140 mg! I have gained weight (which I'm not happy about). So now that I have energy back and spring coming maybe I can get back to walking and eating better. I'm very happy with the results and so is my doc!!!!
Low dose of
Ibrutinib
140 mg! I have gained weight (which I'm not happy about). So now that I have energy back and spring coming maybe I can get back to walking and eating better. I'm very happy with the results and so is my doc!!!!
aremmick
in
CLL Support
6 years ago
Ibrutinib and increased white count
My aunt is on her fourth dose of
ibrutinib
. Her white count went from 33000 to 114000. She was told that this could be a normal side effect and that it will eventually go back down. Has anybody else had this experience?
My aunt is on her fourth dose of
ibrutinib
. Her white count went from 33000 to 114000. She was told that this could be a normal side effect and that it will eventually go back down. Has anybody else had this experience?
Marisa50
in
CLL Support
6 years ago
Ibrutinib and hair color/perms
Has anybody taking
ibrutinib
had any problems with getting their hair colored or permed?
Has anybody taking
ibrutinib
had any problems with getting their hair colored or permed?
Marisa50
in
CLL Support
6 years ago
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Treatment ”options”
Ibrutinib
isn't used as a first treatment option. Just given if other treatments fail or there is a relapse. He has been getting regular blood transfusions and these seem to help the tiredness. All advice welcome. Confusing conflicting emotional times...
Ibrutinib
isn't used as a first treatment option. Just given if other treatments fail or there is a relapse. He has been getting regular blood transfusions and these seem to help the tiredness. All advice welcome. Confusing conflicting emotional times...
LurkerEmma
in
CLL Support
6 years ago
ASH 2018: Dr. Woyach on the Ibrutinib versus BR trial results and so much more
Hi Today we published the 1st quarter’s CLL Society Tribune (https://cllsociety.org/quarter-1-2019-volume-5-issue-1/) that includes an interview with the principal investigator, Dr. Woyack that should put another nail in the coffin of chemo-immunotherapy for all but a very few circumstances. The Ask
Hi Today we published the 1st quarter’s CLL Society Tribune (https://cllsociety.org/quarter-1-2019-volume-5-issue-1/) that includes an interview with the principal investigator, Dr. Woyack that should put another nail in the coffin of chemo-immunotherapy for all but a very few circumstances. The Ask
bkoffman
CLL CURE Hero
in
CLL Support
5 years ago
CLL with Parkinson's disease
I was put on Watch and Wait, until now as my Consultant has decided to start me on
ibrutinib
. As I am 81 and suffering from Parkinsons disease, I wonder if any other person in the community has the same complications as myself.
I was put on Watch and Wait, until now as my Consultant has decided to start me on
ibrutinib
. As I am 81 and suffering from Parkinsons disease, I wonder if any other person in the community has the same complications as myself.
lena10tayl
in
CLL Support
6 years ago
IGm, CLL, Amyloidosis and Polyneuropathy
CLL, heart issues leading to an ablation and tests revealing global enlargement and of course, fast track to treatment of CLL, with
Ibrutinib
and Venetoclax which has been awesome.
CLL, heart issues leading to an ablation and tests revealing global enlargement and of course, fast track to treatment of CLL, with
Ibrutinib
and Venetoclax which has been awesome.
Kods
in
CLL Support
6 years ago
Venetoclax and Low Platelets
My husband was on
Ibrutinib
for 4 years and recently discontinued it as his disease began to progress. He is now on the ramp up phase of Venetoclax. Prior to beginning Week 1, his platelet count was 70. (It has been low for years, since his initial diagnosis of CLL in 2011).
My husband was on
Ibrutinib
for 4 years and recently discontinued it as his disease began to progress. He is now on the ramp up phase of Venetoclax. Prior to beginning Week 1, his platelet count was 70. (It has been low for years, since his initial diagnosis of CLL in 2011).
KLWC
in
CLL Support
6 years ago
Vanity question
With all the struggle on
ibrutinib
I’m feeling more stable platelets good. This is so vain but want to feel normal. Any insight on cosmetic fillers on
ibrutinib
. Embarrassed to ask but
With all the struggle on
ibrutinib
I’m feeling more stable platelets good. This is so vain but want to feel normal. Any insight on cosmetic fillers on
ibrutinib
. Embarrassed to ask but
ElMaga
in
CLL Support
6 years ago
Worried about financial ruin...
But, to my horror, even at $3500 a month, speciality drugs are 50% coverage after your $7500 deductible, so something like
Ibrutinib
would quickly start to mangle our retirement plans. So I guess I have to work till 65 afterall or move to a state with better ACA plans.
But, to my horror, even at $3500 a month, speciality drugs are 50% coverage after your $7500 deductible, so something like
Ibrutinib
would quickly start to mangle our retirement plans. So I guess I have to work till 65 afterall or move to a state with better ACA plans.
TampaSteve
in
CLL Support
5 years ago
Night sweats
He took
Ibrutinib
and dropped due to pulmonary edema. Now he has complains of night sweats. He gets up and breaks the sleep which makes him more tired. Any advice how to cure night sweats?
He took
Ibrutinib
and dropped due to pulmonary edema. Now he has complains of night sweats. He gets up and breaks the sleep which makes him more tired. Any advice how to cure night sweats?
Vick07
in
CLL Support
6 years ago
Australian trials ongoing combining Ibrutinib and Venetoclax?
Newly diagnosed CLL, full results later today with Hematologist. I was wondering if any of these great options are available in Australia? I am currently working in Brisbane, my home town is Adelaide.
Newly diagnosed CLL, full results later today with Hematologist. I was wondering if any of these great options are available in Australia? I am currently working in Brisbane, my home town is Adelaide.
BrightOneOz
in
CLL Support
6 years ago
Ibrutinib and a rash
They started her own
ibrutinib
and she developed a serious rash. They took her off it and they are starting her again 2 weeks later. Has anybody else had this type of situation? Any success stories? She is also on allopurinol to help to prevent tumor lysis.
They started her own
ibrutinib
and she developed a serious rash. They took her off it and they are starting her again 2 weeks later. Has anybody else had this type of situation? Any success stories? She is also on allopurinol to help to prevent tumor lysis.
Marisa50
in
CLL Support
6 years ago
Ibrutinib Partial Response
I have been on
Ibrutinib
a little over a year now Male currently 49 yrs. old my WBC count was as high as 350k now hovering at 85k. I am now on my second oncologist first one was adamant about FCR which I refused since I wanted a chemo free treatement.
I have been on
Ibrutinib
a little over a year now Male currently 49 yrs. old my WBC count was as high as 350k now hovering at 85k. I am now on my second oncologist first one was adamant about FCR which I refused since I wanted a chemo free treatement.
Litevibe
in
CLL Support
6 years ago
Pulse Tinnitus
Jan 2017
Ibrutinib
. Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.
Jan 2017
Ibrutinib
. Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.
RobertCLL
in
British Tinnitus Association
6 years ago
Ibrutinib results
I am entering my fourth month of treatment. I saw my CLL specialist last Wednesday and the wbc have decided to go down after three months of rising. I feel better and hopeful as my Dr says it is doing exactly what we want it too. I will check in with her in two months and pray we are still on our way
I am entering my fourth month of treatment. I saw my CLL specialist last Wednesday and the wbc have decided to go down after three months of rising. I feel better and hopeful as my Dr says it is doing exactly what we want it too. I will check in with her in two months and pray we are still on our way
Bsv39
in
CLL Support
6 years ago
Statins and Ibrutinib
CLL patient on statins and
Ibrutinib
, if so what's the name of the statin?
CLL patient on statins and
Ibrutinib
, if so what's the name of the statin?
RobertCLL
in
CLL Support
6 years ago
Ouch MOUTH SORES
I am on my second month of
Ibrutinib
, it started of great until this week I noticed how dry everything feels. My eyes and noses are really dry . But the worst are the mouth sores that have started. Blisters on my touché and lips.
I am on my second month of
Ibrutinib
, it started of great until this week I noticed how dry everything feels. My eyes and noses are really dry . But the worst are the mouth sores that have started. Blisters on my touché and lips.
Mellowbubble
in
CLL Support
6 years ago
Ibrutinib & atrial fibrillation
Does this mean I have to come off
ibrutinib
? It would be a shame?
Does this mean I have to come off
ibrutinib
? It would be a shame?
shostakovich
in
CLL Support
6 years ago
Co-trimoxazole dosage
I am on
Ibrutinib
and privagen and have been prescribed co-trimoxazole . What dosage are others on?
I am on
Ibrutinib
and privagen and have been prescribed co-trimoxazole . What dosage are others on?
Broadbent
in
CLL Support
6 years ago
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