Every other day

[Denisguay]

Hi: Does anyone know if there are tests, trials or essays that take ibrutinib one day yes and another no with the same effect? Thx.

[CycleWonder]

From what others have posted, the half life of the med is 12 hours. So on your off day, you would have no med working for you.

Are you asking because big side effects?

This is something you should really discuss with your oncology specialist.

[Denisguay in reply to CycleWonder]

No, I'm asking because maybe taking it every other day would be less toxic. It would be necessary to know if 24 hours without taking it is enough for the body to react negatively.

[SofiaDeo in reply to Denisguay]

Every one is different and there is no way to predict. Given that CLL has been able to become resistant to BTK inhibitors, extremely low dosing protocols may not be a great idea unless one was having extreme side effects. Not just to avoid overall toxicity. The only reason my extreme low dosing was tried, was because I was unusually sensitive. We are talking, I had a nosebleed within 24 hours of standard dosing and my platelets tanked on top of severe GI upset, diarrhea, plus extreme skin reactions. Many many people aren't super sensitive & don't have extreme side effects, otherwise it wouldn't have gotten approval.

[Edalv in reply to SofiaDeo]

Hello, I was curious to know what you mean by “extreme low dosing”… Is that 1/2 the regular dosage or even less than that…? Thanks 🙏

[SofiaDeo in reply to Edalv]

Standard starting doses were 420mg (3 capsules at 140mg each) daily. Taking 140mg (one capsule) every other day would be considered an extremely low dose. I was on other meds affecting the same liver enzymes as the ibutinib, and it was hoped that I was seeing extreme side effects due to higher than expected ibrutinib blood concentrations. That the other meds interfered with normal ibrutinib metabolism, keeping the ibrutinib levels higher, and by lowering the amount of ibrutinib taken, it would actually compare to blood levels of people Not on liver enzyme medications. Until we get blood tests for actual levels of our drugs, these types of problems will occur.

[Edalv in reply to SofiaDeo]

Thanks for your reply. I am glad to hear that a lower dosage was still effective in controlling your CLL, in this particular case… 🙏

[SofiaDeo in reply to CycleWonder]

Not quite true, it takes 4-5 half lives for a drug concentration to generally be considered negligible. Just because there is 1/2 to 1/4 of the full dose of ibrutinib in the blood doesn't mean it won't work at all. Some drugs have a threshold blood concentration for therapeutic effect and act this way, but not simple enzyme suppression. It would just mean there isn't enough drug to affect all CLL cells/enough to suppress cells until cell death. Even a partial suppression may hold the CLL at bay, even if the CLL isn't being actively destroyed. Plus metabolites can have activity, which ibrutinib does. So "you will have no med working for you" after 24 hours isn't quite correct.

I'll mention I wasn't in a study or trial, and every other day dosing of 140mg kept my CLL on a slow but still downward spiral. Unfortunately, it still wasn't low enough to stop severe side effects. When further decreased to 3 times a week, the CLL started growing again. Since I still had awful side effects, that's when I stopped it.

[Denisguay]

Essays are needed to know everything in detail

[Davidcara]

Not advised to take every other day. If anything, a reduced dose or change to another BTK would be better, if you are having side effect difficulties

[Scooby852]

From what I have read, the half life of ibrutinib is only 4 hours. That is the same for Brukinsa, the BTK inhibitor I am taking. However, with Brukinsa at least, the drug stays in your body for 2 weeks. There is good scientific data on this, and I also know from personal experience when I had to go off the drug. Check out this study about people taking Ibrutinib 3x/week. It won’t let me paste a link but you can Google it.

Journal of Hematology

Volume 9, Number 3, September 2020, pages 55-61

Outcomes of Reduced Frequency Dosing of Ibrutinib in Chronic Lymphocytic Leukemia Patients Following Complete or Partial Remission: A Pilot Study

[Denisguay in reply to Scooby852]

Thx. pubmed.ncbi.nlm.nih.gov/328...

[Denisguay in reply to Scooby852]

It was just I was looking for. Thanks you very much Scooby dooooo!!

[Dahlia7]

I was on 140mg every other day for a year I believe and it maintained remission for me well. I was restarted on a daily regimen after being off the drug for an illness and did fine. I was controlled on ibrutinib for 5.5 years in total.

[Denisguay in reply to Dahlia7]

And now?

[Dahlia7 in reply to Denisguay]

I transitioned to venetoclax then LOXO 305 and currently LP168.

[CLLCalifornia-USA]

Having had chemotherapy twice previously, I feel blessed that I can take Ibrutinib with no side effects. I have been taking Ibrutinib for five and a half years and it has given me my life back. I understand that I am one of the lucky ones with no side effects and I hope it continues to work. I was pretty miserable before and I was limited as to what I could do. I went with my son and grand kids in their Jeeps on 4X4 trails for my 70th birthday. Thanks to Ibrutinib, life is good. Sally

[Denisguay in reply to CLLCalifornia-USA]

Congratulations.!!

[Edalv]

I remember reading several years ago that some people with CLL were doing well with 1/2 the daily dosage. But I never read anything about using it on alternate days. If I was in your situation, I would discuss reducing the dosage with your doctor, I wouldn’t experiment without his/her knowledge… The last thing you want is for the CLL to become resistance to the meditation…

[AnneHill in reply to Edalv]

I have been taking a reduced dosage to half, 260mg. I had been taking Ibrutinib for 2 years 6 months and reached remission quickly. My dose was reduced to try to relieve my joint and muscle pain. It has improved but it is random and out of the blue my wrists and hands would be weak and painful. When you have pain problems already the Ibrutinib makes it worse.There are side effects with every drug but I agree with you. I would never do anything without discussing it with my consultant, Anne uk

[Edalv in reply to AnneHill]

Anne, I am glad to hear about your remission. It’s also very good to know that even on a reduced dosage it can be effective on certain people. I am still in W&W so this information is very encouraging for when the time comes to start some form of treatment. Thank you so much for sharing your experience… 🙏

[SofiaDeo in reply to Edalv]

The only reason we considered every other day dosing is that the available drug was a capsule. One can cut a tablet in half, but not a capsule. This was done before resistance mechanisms to BTK inhibitors were known. It was assumed there was a more directly toxic effect similar to CIT meds, since ibrutinib is an irreversible inhibitor. As opposed to suppression effects like antibiotics, which our body then uses the immune system to finish off. We now know that low doses can select for resistance in certain people.

I found the study mentioned. It was maintenance dosing not induction therapy, done after the patients were already in partial or complete remission. It was 420mg in only 16 patients. More studies would be needed. But with the resistance mechanisms starting to pop out, IMO this won't be studied or routinely recommended. Possibly only in people like myself who seem to be extremely susceptible, as evidenced by nosebleed/tanking neutrophils after a single dose. I didn't mention that after the nosebleed on the original 420mg dose , I stopped the med and refused to re-start until my platelets recovered, and it took a few weeks. Which was a very different experience than when my neuts dipped on venetoclax, and they recovered after only a few days.....held from the Thurs lab results, restarted on Mon as neuts rose again. And I reacted (my CLL variant reacted) to the dose being held, so that's a big reason why I took longer on induction. I didn't want to "hold" a dose again, the cancer reacted. I wanted to slow down & let my body/marrow adjust to the drug.

pubmed.ncbi.nlm.nih.gov/328...

[Denisguay in reply to Edalv]

Meditatión is a good thing. Jjjj

[AnneHill]

I was diagnosed in 2001 and needed treatment in 2010. There wasnt a choice. I had chemo fcr and the r was rituximab. This combination was new and very effective. It worked for me and I was in complete remission for 5 years and a further 3 years until I started ibrutinib.I understand how you feel. I would love to stop taking it but I also know that we have to realise how lucky we are. Its unbelievable that we can pop a pill and be treated. Its only a few years ago that we would'nt have survived long. My Dad died in 1968 of cll. He was 45 and had been diagnosed for 3 years. It would have been wonderful if there were treatments like we have. Hopefully there will be more and we wont have to be continually treated.

Anne uk

[Denisguay in reply to AnneHill]

Yes, I asked, because I don't feel well, especially when I wake up in the morning I have a bad body, nausea, general malaise and a confused mind, dull. It's strange, because I have these symptoms just before the diagnosis and also before the treatment with ibru. I was 4 years without treatment and I have been with ibrutinib for 1 and a half and the tests are very good, but I feel bad.Does it happen to someone?

[AnneHill in reply to Denisguay]

Yes I have problems too. Because I have other health problems and pain it is hard to know what causes what. I get up in the morning and I am so stiff its hard to walk. I have breakfast and Im not even dressed. I have trouble staying awake. I dont have nausea most of the time but the other things you mention I also have.The ibrutinib has made me stiff and in pain. I blame the other meds for making me sleepy and I have no strength or energy. I had fatigue from the cll before the ibrutinib but I am living a reduced quality of life. Anne uk

[Denisguay in reply to AnneHill]

I'm sorry for your pain. Cheers.

[AnneHill in reply to Denisguay]

Sorry I was so miserable. The consultant is ringing me tomorrow and I intended to stop moaning and be glad my numbers were so good. Im not sure now. Anne uk

[SofiaDeo in reply to Denisguay]

So sorry to hear you are feeling awful. *TMI alert, don't continue reading if dislike body function stuff*

I did change my diet quite a bit and felt somewhat better. I now eat really simple foods, no frozen dinners or boxed sauce mix. It was odd to switch from what I had been thinking as "normal" meals, but I am happy that my stools are normalizing. Going from diarrhea, to a few years of oozy paste, to now finally solid bowel movements.

[Feldman]

Let me start by saying that I’m not in anyway recommending this to anyone. I was on wait and watch for 10 years before being treated for my CLL. My oncologist started me on 280mg of imbruvica. His belief after seeing his other patients side effects were that the same 420mg dose should not be given to a 300lb person and also to a 120lb person. I had never been treated for my cll prior to this. I was being treated primarily for my bulky lymph nodes in my neck. I was very scared to take the Imbruvica pills once they arrived and had them for a month before my oncologist persuaded me to take them and then stressed that I needed to have my blood closely checked. Within the first week, I had a broken blood vessel in my eye, bloody nose, felt horrible and had palpitations and small red dots on my hands and face. He told me that I was not a candidate for imbruvica. After seeing a cardiologist, I convinced my oncologist to put me back on imbruvica. He told me to start taking it every other day and if I handled it better, I would go back to every day. Unfortunately I was told to continue with every other day and have followed that schedule for 3 1/2 years. I had run into Dr Mato at a cll event and his concern was future possible resistance which now makes me uneasy. I would be curious about any studies related to every other day dosing. The only side effect from IB is high blood pressure and weight gain. At this point I’m fat and happy & feeling fine for now.

[Denisguay in reply to Feldman]

I also only take 280mg and am skinny but not feeling well. I think that it is the disease itself that produces these discomforts due to toxins expelled by lymphocytes, but doctors do not know exactly what is happening.

[SofiaDeo in reply to Denisguay]

Also effects from drugs contributing IMO. The side effect profile of the BTK's seems to affect a large percentage of people, differing in severity. "Diarrhea" will be counted if it occurs once a week, day, or 3-4 times a day. There are a number of SE's that occur in more than 1-10%, so they are considered "common". And ibrutinib has a large number of potential "common" SE's.

I had to change my diet to minimize the diarrhea when on it.

[SofiaDeo in reply to Feldman]

Well, any cancer can potentially become resistant to the targeted drugs. I think the takeaway is, "be aware this might happen" and report unusual symptoms. Because there is some data coming out, where as soon as resistance emerges, adding another agent is tamping it down quickly. IMO its like worrying about being hit by a car or bus at an intersection. If one is aware and responsible, the risk is very small. Please enjoy your treatment success without any worry of potential resistance. Remember medical people are often thinking "disaster preparedness" hahaha

[Feldman]

I’m sorry to hear that you are not feeling well. Would you consider going for a second opinion?

[Denisguay in reply to Feldman]

I did It.