Log in
CLL Support Association
12,370 members18,922 posts

IBRUTINIB shorter time treatment - e.g. for one month

Did they ever do a clinical trial on a person taking Ibrutineb for only a month? What if some of us only need to take this drug for a short time. I would like to see stats on this. I want a cure with less toxicity. Can some of us be given a dosage they would give a baby. My body does not like drugs of any kind. When my time comes I am going to have a hard time and may ask for a lower dosage.

24 Replies
oldestnewest

Unfortunately, there is no cure in CLL except perhaps for some undergoing stem cell transplant. Some with 10 + years FCR remissions might be considered cured, but that is still a bit of a contoversy.

Ibrutinib is a drug for life or until it fails or side effects become to hard to manage, then you move to something else. Failure to do so is not a good situation...

The science says you need a certain dose for it to be effective, although there are patients sometimes on reduced dosing to try and alleviate side effects... however it is unknown if this is effecting their overall survival.

Please don't assume you will have difficult time with Imbruvica (ibrutinib) most patients do very well, with only minor side effects many of which resolve after a few months...

Many better drugs coming in the next few years... Dr. Awan, will guide through treatment.

~chris

7 likes
Reply

Thank you. I have always had a problem taking drugs. Every drug I have taken during my life I end up in the hospital and then told by the Dr. one out of so many are allergic. Right now I take no drugs at all. Even when I had the bone marrow biopsy I had a reaction. I had to have someone stay with me for a week. The Dr. told me the drug was not coming out of my system.

Reply

The research on staying on Ibrutinib for a short period is not promising - patients need to stay on it for quite a while - typically a few years, to achieve a good response. Patients coming off Ibrutinib for a lengthy period early in the course saw CLL progression and shorter survival times...

You won't know how you will go with Ibrutinib until you try it and you may just have minimal to no side effects. The effect of reducing the dose is being studied and some patients continue to do well on a reduced dose.

Neil

PS I have corrected your title so others can find your interesting question.

5 likes
Reply

Thanks Neil...I always listen to your advise. You have helped me in many ways.

2 likes
Reply

There are quite a few patients on Ibrutinib who have had to take reduced dose because of some side effects problem. And those people, from all I have read, are doing fine. There is science suggesting that 2.5 mg of Ibrutinib per kilogram of body weight will achieve full BTK occupancy - in other words will give you the same therapeutic effect as taking the recommended 3 pills a day. For me at my weight of 55 kg, that formula would translate to just 1 pill a day. I have been on ibrutinib for 5 months. I dose-reduced myself to 1 pill a day 2 months ago, then went back up to 2 pills a day last month and am staying there. My doctors know. They aren't recommending I do this. But, it's my body, so my choice. I believe, based on science and case studies to date, that 2 pills a day is giving me every bit as much therapeutic benefit as I would be getting from 3 pills a day. So I don't see any need to burden my body further.

There are also members on this forum who have had to quit ibrutinib because of intolerable side effects after they had already achieved good results on it. And some of these people have not been transferred over to other drugs. Some of them are at the 18-month and even 2-year mark of being treatment-free, and their remission is still holding. I plan to stop taking Ibrutinib at some point. I believe my remission will hold - at least for a while. Possibly 2 or more years. By then, even newer and better drugs.

So it is a big unknown whether people can safely take less or safely stop taking Ibrutinib and hang onto their remission. Some preliminary science and case histories suggest both are possible, at least for some people.

kim

8 likes
Reply

That sounds encouraging. If people have reached two years without taking any drugs after Ibrutinib seems like they should be doing more studies on this. I am with you about less of a dosage. Thanks

3 likes
Reply

Here is one paper referencing the 2.5 mg per kg body weight: ascopubs.org/doi/abs/10.120...

Here is another: pubmedcentralcanada.ca/pmcc...

"Greater than 95% Btk occupancy was observed at ibrutinib doses of at least 2.5 mg/kg per day"

You will find more if you google it.

As for the patient testimonials about remaining in remission after ceasing Ibrutinib, those I have found by scouring this site. I don't have the links to the original postings, and I don't know if it's okay to post other members statements without supplying the link to the original...

kim

3 likes
Reply

Ideally you should post the link to member's posts, so your readers can read their full posts to appreciate the context. If you have a record of the members concerned, you may be able to find their replies by checking their activity on healthunlocked.com/user/(member's name).

This is a very important, serious topic.

Neil

3 likes
Reply

It would take me a very long time to locate these member comments that way, Neil. Otherwise I would do it. These were replies they made on other people's posts. I might have to sift through dozens of things to find each link I am looking for. But I understand the importance of posting a link if I am going to quote a member's statement. So I will just let others here do their own searching for info.

1 like
Reply

Sure would be nice if your premise were correct. Unfortunately, as others have already written, it is not the case.

When I began taking Ibrutinib, most of the myriad palpable nodes in my neck went down within a couple of weeks, something that many report. If one looked at only those nodes, we might be lulled into thinking the drug had done its thing, and we could stop being vigilant.

However, I also had clusters of 45-50mm nodes along the iliac artery in my abdomen, some pressing on my bladder, causing trickles of frequent urination, some near the ileocecal valve, causing food to back up as it traveled from the small to large intestine (felt by the bulge that would develop in that area).

It took 12 months on Ibrutinib to notice profound changes on a deeper level in my body. For one, I awoke one morning aware that my head felt totally clear and focused, instead of the brain fog that had been present for a couple of years. (The fog was not a result of the drug; it was lack of sufficient red blood cells circulating to my brain. I had been functioning, but slightly under the radar.) In addition, I didn't have to urinate every two hours, and was able to sleep through the night without having to get up. The trickle turned into a torrent. The bulge from the backed up food was no longer present. Without having a bone marrow biopsy, I'm guessing that the few red blood cells that had been struggling to take hold in my marrow were finally reaching a normal level, and continue to find room to grow. Around this same time, my gums and lips turned from pale white to red. People started commenting on my good color. Even better, I suddenly felt energetic, and ran to get some paint to cover the walls of my bedroom in a beautiful bluish-green that resembles that incredible color in Carribean waters, something I had been wanting to do for years, but lacked the energy.

I share these symptoms to heighten awareness that this was a year into the Ibrutinib. It was still doing its job on hidden cells, and continues to do so now that 7 more months have passed.

I have always been the one in ten thousand who experiences side effects of drugs. As a result, I have created life patterns that tried to avoid them. It is why I eat healthily; practice meditation, yoga and tai chi; exercise regularly; and turn to nontraditional approaches to healing. The reality of requiring a medication in order to continue to live was an anathema to me. The other reality is that I developed CLL despite my healthy approaches.

Happily, I can report that I have had only a couple of relatively minor and manageable side effects from Ibrutinib. I truly believe that my body knows that it needs it in order to survive. At the beginning, I said a prayer before taking each dose, encouraging my body to accept them and allow them to heal my cells. I continue to thank those 3 pills every night as they sit in my hand before popping them in my mouth.

I am eternally grateful to have been diagnosed at a time when researchers are developing immunotherapies that are not as toxic as chemo. It's all relative.

So I encourage you to take a leap should you reach a point where treatment is necessary. It takes an attitude of faith, hope, and trust, and it keeps us alive. Sure beats the alternative.

My mother's mantra is one that gets me through lots of situations: everything is attitude. I grew to hate hearing it when growing up. Now I get it. If you're listening up there, Mom, thank you.

17 likes
Reply

Thank you. That was great to hear how this drug is helping you.

1 like
Reply

I agree Starsafta. Attitude matters. All my life I took care of my body. I thought I would breeze through old age with no problems. No drugs and very little alcohol. Life happens. 😬 I’ve been on Ibrutinib for 13 months and I’m enjoying life again with no side effects at all. I have energy to get out and do things. The brain fog is gone and I make quilts, sew for friends and family, garden, volunteer, hike, yoga, read and pretty much do anything I want. Just learned to make Artisan bread this week and enjoy sharing it with friends, family and neighbors. I would never limit myself by not taking Ibrutinib. I’m on 3 capsules daily. If studies find less will work, I’ll change my dosage with the blessing of my doctor. Each of us have to do what we feel best for our body. I’m 66 and remember how miserable I felt before Ibrutinib. I am fortunate that I don’t need any other drugs at this time. Thanks, Sally

8 likes
Reply

Hello. I have been on imbruvica for 2 years now. Taking the normal 3 capsula a day. So far only people that have other diseases and don’t tolerate well have a lower dose. The ideal dose is 3 capsules per day taken in one shot at same time every day until progression of disease or secondary effects. I know some people are on it 5 years now .

4 likes
Reply

Thank you.

Reply

2 months in, that is good to know

Reply

Well there are a few people on this board

1 like
Reply

I have not reached 5 years on imbruvica yet but my doc believes I can go up to 8 years!

2 likes
Reply

CLL is a funny bird. Many factors play a role on how a person responds to a treatment. I just go with the flow

Reply

Gene - It is appropriate for you to ask individuals to share their experiences if they are comfortable doing so, but not appropriate to ask someone to share someone else's experience. The original post here is not locked. People may have shared information in locked ( community only) posts with the understanding that their information would be restricted to the community. Sharing it here would be a violation of their rights as members.

2 likes
Reply

Personally I would never stop taking my ibrutinib unless recommendations change or I cant tolerate it. I am very grateful to have this amazing (for many) drug. I believe the evidence is that stopping 8 days or longer effects long term outlook. I dont want to take any chances. I take other pills and vitamins every day so no big deal ...right? Cost is a whole other discussion

6 likes
Reply

PlanetaryKim, I admire your brave action, trusting your intuition and body as you adjust your dosage. I truly hope that it works for you, and that you will share your path along the way.

As I sense that my body is returning to better balance after 18 months of Ibrutinib, I have to admit that I have toyed with the idea of doing the same. I asked my oncologist about dose reduction at my last visit, 3 months ago. The Dana Farber mantra, at this time, is that the full recommended dosage stands until they have sufficient data to prove otherwise. Who can argue with that?

This May 2017 study on the "Impact of Ibrutinib dose adherence..." provides a good case: ncbi.nlm.nih.gov/pmc/articl... Of course, this article is almost a year old, and some are continuing to examine dose reduction.

We know that Ibrutinib works effectively and slowly. The current sample for dose reduction is relatively small, and all sorts of factors in each individual affect the result, so it is likely not a one-method-fits-all plan. How do we know who will respond well and who will not? What amount of faith does it take to test it?

In preparation for my next visit in a few weeks, I've been thinking of asking, in advance, if flow cytometry can be included in the analysis, to measure MRD. My oncologist and I share similar views on not testing or dosing unless indicated. I can hear him echoing my thoughts: Would the expense of this test be simply to satisfy curiosity or would the result actually affect how I proceed with treatment at this time?

I am unmutated. When I had to stop Idelalisib because the trial closed, my nodes rapidly started growing again. Yet, Ibrutinib has melted them to a far greater degree. Are things different now? Do I have enough faith to reduce the dose? Am I as brave as PlanetaryKim?

3 likes
Reply

Taking risks that go against the norm does not necessarily equal bravery. Perhaps conviction is a better word, whether conviction that we know our own bodies or conviction that our specialist knows what is best for us. With any treatment - standard, a clinical trial, or a personal variation on one of these - I think there is a certain leap of faith. Each of us has to decide which leap is right for us.

3 likes
Reply

Dr. Sharman, who has a a great deal of experience with Imbruvica (ibrutinib), clearly lays out the dosing and cessation issues...

cll-nhl.com/2015/05/take-yo...

3 likes
Reply

Thank you,

Reply

You may also like...