i was diagnosed with CLL in Dec. 2008 at age 69 ….i did w&w till i hit 400,000 WBC and went on Rituxan in June 2020 for 4 mo. and in remission. for approx. 1 year. My HGB went down to 5.5 and needed 6 blood transfusions over time. And lots of Prednisone to keep it up. I did more w&w through 2021 and 2022…now this week in 2023 i hit 210,000 and HGB of 6.1. More blood transfusions and prednisone. Now ill be 85 in October and they want me to start imbruvica (pill form) since i refused more IV Rituxan. I wanted to ask anyone that has or is on this pill, what the results are and side effects. Someon said they were on it and it worked for 2 1/2 years and then it stopped. Ill take 21/2 years gladly at my age. I wanted to see other opinions on this med. i always wonder about something. In 1993 i gave my son a kidney and a year later he was diagnosed with lymphoma. Could it be possible it was in my system then. He died of other complications in 2007 at the age of 44. I could probably go on and on but what i want is information on people using thisdrub and what they think of it. Thank you…Candy1015
Imbruvica: i was diagnosed with CLL in Dec. 200... - CLL Support
Imbruvica
Venetoclax, zanubrutinib, or acalabrutinib are daily pills for CLL.
Both zanubrutinib and acalabrutinib are the same type of medication as Imbruvica (ibrutinib), but acalabrutinib has fewer side effects than Imbruvica, and zanubrutinib has fewer side effects than acalabrutinib. These pills are usually taken for as many years as they work.
Pirtobrutinib is a new drug in this same class, has the fewest side effects, and will probably be FDA approved for CLL soon. You could ask your physician to prescribe pirtobrutinib for you "off label" since, in January, it was FDA approved for mantle cell lymphoma. It might be that a CLL specialist would feel more comfortable prescribing it off label more than a general oncologist, since many CLL specialists already have substantial experience using pirtobrutinib with their patients taking it for CLL in clinical trials.
Another different class of non-chemotherapy, targeted pill for CLL is ventoclax, which, for me. had few if any side effects. Usually it is just given for one or two years, giving a few years of remission for many people. With higher WBCs or bulky lymph nodes, venetoclax needs to be started in a hospital to watch for and possibly treat tumor lysis syndrome, which can occur when too many CLL cells are destroyed very quickly, with overwhelming levels of cellular contents released into the bloodstream. That is why it is important to have frequent labwork during the ramp-up. While this is rare, for those with high WBC counts and large lymph nodes, it is better to be safe than sorry and to ramp up for a few days in a hospital.
Candy2015, I've been on ibrutinib/imbruvica since 2015 and it is working well for me. My only side effects have been easy bruising, splitting nails and curly hair.
Have you tried taking biotin. It has stopped my nails splitting. Takes a few weeks. Anne uk
Hi Candy1015,
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Your treatment history is unusual, but we were both diagnosed in 2008 and I was given infusions of Rituximab / Rituxan in 2010, when it was first approved, it was the first non Chemo immunotherapy used for CLL.
You are fortunate that it took 12 years before you needed treatment when I needed it after 2 years.
Since then I have had much better treatments that were approved later. Ibrutinib / Imbruvica is one approved in 2013 and has a long history of good results but some side effects that about 20% of patients cannot tolerate.
Better drugs with fewer side effects like Acalabrutinib / Calquence and Zanubrutinib / Brukinsa have been approved in the last 2 years.
None of these drugs are considered Chemo therapy.
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It seems unusual that your doctor was using Rituxan and Prednisone in 2020, since most of our USA CLL expert doctors had switched to other treatments many years before then. And the statement: " The doctor told me if i dont go on chemo he wouldnt be able to help me in 6 mo." Is also very unusual.
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Unless there is other information we cannot see in your profile or posting, you might want to consider getting a 2nd opinion from a CLL expert. If you are in the USA, you can get a free 2nd opinion without further testing and without leaving your home by applying here:
cllsociety.org/programs-and...
or choose a CLL expert from this list: cllsociety.org/newly-diagno...
cllsociety.org/programs-and...
cllsociety.org/2020/11/inte...
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Len
Given your age and health condition it is impossible to know in advance how you will tolerate Ibrutinib. Get a second opinion from a CLL expert if you can.
Be carefull. My a-fib became bad enough to require a pace maker/defibulator after about a year of taking it
thank you so much…will bring that up with my doctor…your the second reply with that advice.
I have been taking Ibrutinib for nearly 4 years. It worked really quickly. I have had pain in some muscles and joints. This improved in time. My dose has been lowered and so far my numbers have stayed as normal and the joint pain is only now and again. I have had chemo and Rituximab. Ibrutinib is nothing like these treatments. You can lead a normal life.I dont need to use a different drug but other peoples advice could be taken to get a 2nd opinion, Anne uk
HI CANDY1015. I Am now 77 years of age and I was first diagnosed with CLL 13 years ago. After being on watch and wait for almost 8 years my CLL specialist recommended that I start treatment due to a very enlarged spleen and low RBC, etc. I was initially administered Gazyva and was to follow up with Imbruvica. I could not tolerate the Gazyva (Obinituzimab) and my physician switched me to Rituximab which I am, tolerating extremely well. I have been on a maintenance mono-therapy infusion of rapid Rituximab for 5 years now and my labs are near perfect!. There are many classes of oral medications now approved or about to be approved, and my CLL specialist offered me to the option to switch to an oral med (s) to avoid the quarterly infusion visits, but my choice for the time being is to continue with the Rituxin until such a time that my CLL numbers change. As you know, with this disease there are many variables and every body responds differently to this disease. I wish you all the best, and I am very saddened by the loss of your son.
thank you so much
I've been on imbruvica for @4 years with minimal side effects. I am currently receiving Obinutuzumab infusions with only some fatigue as a side effect. My labs are good so far. Make sure you are staying really hydrated if you take the imbruvica. Sounds like you have quite a few options and hope you the best.
thank you so much
im starting Imbruvica in 2days…now on Allopurinol…i worry about being hydrated because i only have one kidney and i cant hold much fluid. Im in the bathroom all the time now. I dont know if i can handle 62 oz.day.
I try to drink a whole glass of water with the imbruvica. If you can, try to drink as much as you can early in the day. I have found that I feel better when I do that. Good luck with the imbruvica. It's really helped me. You've got this; take care.
I would ask your nephrologist to weigh in on the optimal amount of daily fluid for you, personally. Then follow that recommendation, and don't worry. A BTK is a good choice IMO because they generally stress the kidneys less, they tend to work slower. So if it were me, I would ask my nephrologist what my fluid intake should be, and also what "kidney function lab test parameters" should be used in determining if/when to pause or change a dose. In case your CLL variant happens to react strongly. I find that thinking/planning like this ahead of time, a "disaster preparedness" type of thing, is very comforting. I know I have a plan *if* anything starts to trend in the opposite direction of what I want. So I don't worry so much, I have a plan of what to do. You are concerned about your single remaining kidney, planning out your maximum fluids and how much (if any) changes in your kidney function parameters you can safely tolerate, and how to adjust the drug dose for you personally, should reduce your worry.
I've been Imbruvica since being diagnosed 6 years ago, with very few side effects. I'm 70. I was diagnosed with Afib after contracting Covid but my mother and older sister have/had it, as well, so probably hereditary. I have some random bruising and some tolerable skin issues, but my life is pretty normal.
Hi. I have been on Imbruvica for 5 years. It has changed my life so much for the better. No more infusions minimal side effects. My Haematologist thinks it is now becoming less effective and is looking for an alternative. Best advice I can give on this medication is to drink LOTS of water to dilute and flush the system . Best wishes
First Cycle of FCR (IV)
Ibrutinib (Imbruvica) fatigue
Looks like here we go again...to treatment.
stopped imbruvica
