I was diagnosed with CLL on the 6th March 2020 and have lymph nodes in my neck, armpits and apparently in my abdomen. Some days I an very fatigued, however, I have no fever.
I am due to commence Ibrutinib on the 1st June.
Question: Once I start Ibrutinib, how long until I have any benefits such as lymph nodes reducing and the fatigue getting less. Thanks.
Magnus
I started Ibrutinib on February 3 and by Feb 10, there was significant reduction in my lymph nodes in my neck area. I did not have fatigue prior to starting. My platelets, neutrophils, lymphocytes have dramatically improved in 3 months.
Thank you for the reply. How long do you think you will take Ibrutinib for?
I have been on Ibrutinib for 3 years now. My initial response was months, however other patients report a more rapid response. Unfortunately we all respond differently. After 3 years I still have some nodes, but they are stable. Bloods are just about normal.
You may hear this a lot, "everybody is different". That being said, my wife's lymph nodes in her neck, under her jaw and along her collar bone (some the size of a walnut others a marble) begin to shrink in a week and were totally gone in about three weeks. One pea size inside her mouth took about 6 weeks to leave and none of them have come back in over three years. She is 17p deletion and TP53 Complex karyotype.
Thank you for the reply. How long will your wife be taking Ibrutinib for?
Is there any trials with obinituzimab and Venetoclax? Of acalabrutnib plus obinituzimab and Venetoclax? Ask your CLL specialist those seem to be very effective, also is this your first treatment. ?
My platelets, neutrophils, lymphocytes have dramatically improved in 3 months with very minor side effect the first month and pretty much none since. Never had fatigue or swollen glands.
I too am on the Ibrutinib course as part of my drug trial that was started in May 2018 and is planned to end after a six year period for me my lymph nodes all but disappeared in a matter of days and have not caused me any further concern since. Not sure if I will be staying on Ibrutinib or weather my medication will be altered during the trial.
Good Health to you
For my wife Ibrutinib caused horrible leg cramps and afib, both are well known Ibrutinib side effects.
Ibrutinib was a miracle drug for me. I felt like a new person after the first week. I started on 540 mg in Aug 19 and Jan of this year it was reduced to 360mg because of some bothersome side effects that have since cleared up. I was told that it would be a lifelong drug for me. I guess unless something new comes along. Good luck with your treatment.
My lymph nodes went down noticeably in a week! My labs were almost normal in a month. I didn't really have fatigue. Truly a miracle drug
Virginia
I had a huge neck and my big lymph nodes were choking me In way less than a week my neck was thin again I lost several pounds that week as I had them in my abdomen as well. It was a great week !!!
I have always had success with fighting fatigue through exercise Good luck to you and I hope you get a speedy reduction of your neck nodes. I remember how good it felt.
Catnap7
Thank you for this question. Your symptoms and start date are close to my own.
I've had the same reaction to starting Iburtinib as others have noted. The bulky nodes started disappearing in a week. All gone within a month. Blood levels also back to normal ranges within three months.
side effects were another story. they got worse over the first six months. then i started taking magnesium pills and lots of water to reduce the muscle cramps. Lots of biotin to relieve the splitting finger nail problem.
Fatigue is another story. Never went away. Actually gets worse, but maybe that's due to aging.
Your other question about how long you'll be taking Ibru is the subject of lots of discussions. I was on Ibr for 5.5 years, until the side effect issues became significant quality of life impediments. One option was to switch to acalabrutinib, but my hemoc said let's try venetoclax and a limited duration therapy protocol. V wasn't much of a risk of tumor lysis for me since my WBC, ALC and other indicators of tumor load were low. So i've been on V for almost a year. As soon as i can get to a hospital without covid-19 risks i hope to be tested and be uMRD. At that point i hope to stop taking all meds, at least for awhile.
The oral drugs work fast now . Did you discuss any fixed duration treatments like
Obinituzimab and Venetoclax combo ?
Acalabrutnib and Venetoclax combo ?
Hi
I started Ibrutinib a year ago.
My spleen had shrunk within days.My energy came back soon after/ bit of a rough start getting sorted on right dose.Im feeling good and definitely have more energy.
I was hesitant to start treatment but with a very enlarged spleen, low platelets and hemoglobin I took the advice of my dr.
Miller1960
Hi Magnus. Welcome! I had significant node reduction within first week of ibrutinib. Fatigue can be trickier to overcome since it can be due to so many different things such as anemia caused by CLL, cytokine release and other immune dysregulation caused by CLL, emotional stress, sleep loss, potentially thyroid issues. It's very hard to predict when anyone will overcome fatigue once they start treatment.
But good luck to you! Glad you have found this group.
kim
Kim,
Thanks for the good news. How long do you expect to be taking Ibrutinib for?
Magnus
I was on ibrutinib 2.5 years. Worked great for me! But also gave me afib (atrial flutter actually). So I was moved to venetoclax this year.
Ibrutinib is not a drug you really ever stop taking unless you become resistant to it (the CLL starts progressing again) or the side effects become too severe. It is not a drug that ever gets you to the finish line. Other drugs (venetoclax and the older chemo combos) can get you to a point where you stop and don't need further drugs for a while - perhaps won't need further drugs for years for some lucky people. But ibrutinib does not work that way.
Hi, for me Ibrutinib and Privigen (for the immune system) worked within days. It was a dramatic improvement! I haven't had side effects, after nearly two years. Still feeling tiredness and lethargy, but it comes and goes.
A word about taking new drugs - make sure someone is around that can drive you to a hospital when first taking a new drug. Had a bad reaction to Septrin, anaphylactic shock, so be careful for an hour after taking something new. Once it is in your system, you should be okay. Sorry if this scares anyone but best to be careful.
I think mine reduced significantly within 3 months. I was surprised! My blood work was much better in 3 months as well. I've been on Imbruvica for 4 years now. Had my ups and downs.
My lymph nodes went down in a week!!After 6 months they were half the size they were before. Almost normal size now,it is an unbelievable drug. I hope you don’t have any side effects but it is keeping us alive.
Tony,
Thank you for the encouraging news. How long have you been on Ibrutinib and how long do you expect to be on the drug. Thanks.
Magnus
Very very quickly. I do have more side effects too - bruise very easily & my joints hurt like hell today.
My joints just started the intense pain in the last couple of months. My CT scan didn’t show much on the hips but I know from experience that an MRI is the best way to tell. I have had probably 6 on my back 2 on knees and 1 on my shoulder. My dad had a lot of joint pain and died from cancer at 54 so I now know how much he hurt unfortunately. I will figure out something because I am very stubborn. 😂
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Ibrutinib / Venetoclax 
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