My wife Gabriella started Ibrutinib in January with the regular dose of 420mg/day as a first line treatment.
She is 13q delation mutated and ignited treatment mostly because her neck made her disfigured.
After a couple of weeks of intense pain , her doctor agreed to lower the dose to 280mg/day and until a month ago , everything went fine .
WBC went from 200 to 8 ,lymphocytes down to 4 , neutrophils 42% ,hemoglobins 12.5,paletets 183 .
Heavy periods during the last 2 month plus recurring Lyme disease has again made her life miserable and her doctor reluctantly agreed to try 140mg/day .
I have seen the tendency of doctors who think one pill a day should be enough but I would like to know if any of you are on this regiment and how it is working.
Also is it ok to go back to 280mg/day if numbers increase?
Thank you and good health to all
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Sergi
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First he was pushing for FCR since she’s strong and only 48 and remission seems tempting but she also has other high cancer risks (bladder and skin )so that was the obvious choice at that time
Canuck, CLL can (not will) become resistant to Ibrutinib for a small percentage of patients - just as it can do for any treatment including Venetoclax. That's why CLL has a reputation (also not always the case) for 'always' coming back. We have members who are still doing well on Ibrutinib 6 or more years after commencing. Further, about 10% achieve U-MRD on Ibrutinib after 5 years.
Hi Sergi. I have been on ibrutinib for 2 years, and was on 1 pill a day for most of that time. I was good for most of that time. But a point came where it looked like the 1 pill (140 mg) was just barely but not quite keeping the CLL under control. I was feeling unwell and my neutrophils could not get back into the normal zone.
And so I went up to 2 pills daily in July (2019), and have felt much better, much healthier and stronger, and my blood work is now normal.
I originally started on 3 pills a day (420 mg) back in Sept 2017. After one month I dose-reduced myself due to severe back pain. My doctor was aware but did not approve it. I stayed on one pill daily for more than 18 months. The CLL seemed under control . But then a point came where it wasn't really completely controlled. That's when I went back up to 2 pills (on doctor's suggestion).
I now weigh 130 lbs (59 kg), But when I started ibrutinib I only weighed 117 lbs (53 kg). Weight may be a relevant factor in ibrutinib dosing, although that is not yet recognized by most doctors.
So in answer to your questions:
1. Yes, 140 mg can conceivably work for some people and for some length of time. And there are CLL patients out there on 1 pill daily for various reasons. But monitor blood work closely, and monitor your wife's symptoms closely. If anything is getting worse and won't improve (e.g., platelets,. neutrophils, hemoglobin, swollen nodes, fatigue, sick feeling, fever, night sweats), then one pill may not be enough.
2. Yes, you can absolutely increase from 1 pill back up to 2 or even 3 pills. In my case, when I finally increased from 1 pill to 2 pills, I started feeling better in 3 days, and my blood work got into the normal range on everything in 4-6 weeks.
Good luck. I hope you will keep us posted on your wife.
Great answer Kim. All drugs like ibrutinib typically go through phases of clinical trials, at least one of those phases being to find out the optimum dose. They want to give us the least amount of any drug we take that gets the job done, balancing safety and efficacy. For a drug to be successful it has to both work and be tolerable.
The outcome of the ibrutinib clinical trials was that 420 mg is the dose at which ibrutinib has tolerable side effects for most and is still effective. That has never changed. Most cll doctors will keep patients at 420 mg up until they have to reduce the dose due to side effects or discontinue due to resistance (which is very rare for first time users).
When side effects become intolerable, some doctors will reduce the dose out of necessity. Some people appear to do well on reduced doses, some not. Its a very individual thing. There are studies that say reducing the dose increases the risk for resistance to develop, there are studies that support reducing the dose.
I think most doctors will want to follow the label and give the 420 mg dose so long as its tolerated.
As to the question of whether its okay to increase the dose if there numbers go back up, I think the answer would be yes, but thats' not the important question. The question for me would be why did the numbers go back up?
If the numbers went up because there was not enough ibrutinib to do the job, it seems logical going back up would help. If the numbers go up because resistance has developed, then increasing the dose might not help.
With 13q and mutated cll, I would think developing resistance to ibrutinib is not that likely, buts that's just an educated guess on my part, I really do not know. I do know anecdotally a lot of folks do very well on reduced doses of ibrutinib.
My partner has been on 4 ibrutinib tablets a day for the past two years. Today he heard the news that they don't seem to be working anymore. He's completed devastated and has been told he will have to have chemo again. He's had his own stem cell treatment as well. It's been 5 years since he was first diagnosed.
Polly, I am sorry about your partner's bad news. You might want to ask his doctor if zanubrutinib is a possibility for your partner who I understand has mcl, not cll, if I read your earlier posts correctly. Its like ibrutinib, but it binds differently so it might work where ibrutinib has failed and spare your partner another chemo round.
Thanks for response cajunjeff. I'm keeping a list of other drugs which might help, to present to his Consultant. UK can sometimes be behind in certain treatments.
Good luck Polly. I think there are a few of these what they call non covalent binding btk drugs in development. Its worth asking to see if there are any clinical trials in the UK involving non covalent binding drugs. I am sure there are other options, I just wanted to put this one on your radar. I don't know about access to the drugs, even in the US. I assume it is mostly through clinical trials.
Yes Polly, Car T is often discussed on here usually in the context of Cll treatment. I have linked you below to an article specific to mcl.
Since your doctor brought it up, I assume he/she is aware of some clinical trial your partner might have access to. Car T is still being developed and improved upon.
Dr Brian Koffman who is involved with the Cll society and is a frequent poster on here underwent Car T for his Cll and I think is doing great afterwards. Good luck.
This is a topic of interest for me as I have also self reduced dosed for the last 6 months due to persistent and quite severe arthralgia that was being ignored by my haematologist, although I have just "come clean" in last weeks tri monthly check up - not sure what the fall out will be as yet. Can I ask where your blood results were at the time you decided to reduce dose and did you go straight down to 1/day or did you phase it? For me all my blood results were back in normal range when I dropped down to first 2 and then 1. During this time there has been no backsliding in my blood results and my ALC has continued to further decline. I found that the arthralgia was helped a little by dropping to 2/day but was helped a lot more when it was dropped to 1/day. I am currently in a bit of a quandary over whether to stick with the 1/day or go up to 2/day if I can tolerate it. In terms of CLL I have responded extremely well and believe that finding a way to stay on it is the way to go, but I do have concerns that at 1/day is perhaps inviting becoming resistant to the Ibrutinib. Unfortunately there is virtually no definitive information on this matter and I doubt very much that there ever will be.
Just been called by my GP to inform me that an x-ray I had on Monday has shown mid stage osteoarthritis in both hips along with joint space reduction, this follows several months of unresolving severe lower back pain. So yet another unwelcome journey that I will have to contend with.
Hi Mike. My neutrophils were a little low (1.5) when I dose-reduced myself in December 2017 (due to excruciating back pain). Everything else was in normal range. I did go straight down to 1 pill a day.
At some point my neutrophils got into normal range on the 1 pill daily. And I wasn't having lymphoma B symptoms. So I felt 1 pill daily was working. However, when I had chemo-radiation for a different cancer in summer 2018, that dropped my neutrophils again. Neutrophils never recovered to normal until I increased my ibrutinib to 2 pills in July 2019. (My doctors were actually glad to have me on just 1 pill daily during the chemo-radiation, so there wasn't additional burden on my body or neutrophils at that time.)
Also by that time (spring/summer 2019) I was having a hint of lymphoma B symptoms returning - occasional unexplained fever, very slight night sweat, and general unwell feeling without ever becoming sick with anything. Also poor mood and lack of motivation (both atypical for me).
Also - and of most significance - each time I had a short stoppage of ibrutinib, my CLL lymphoma B symptoms came back immediately, within 2 days, suggesting that very little marrow clearance had occurred. My low dose of 1 pill was just barely managing the CLL but not really making headway on clearing the marrow.
Going up to 2 pills daily in July 2019 really sorted me out - and very quickly. I don't have the feeling that a 3rd pill would make any greater gains for me, but it might expose me to more off-target effects (which I currently don't have). I worry, for example, about developing a-fib down the road as a cumulative effect of ibrutinib, and maybe that can be forestalled by taking only as much as I need and no more. Which for me at my weight, I believe is 2 pills daily.
I do discuss these things with my CLL specialist. My position is: my body, my choice. So there should be no reason why I am trying to hide anything from any doctor, since these are my decisions to make.
I have been ONE year on 420 MG , Next complete year on 240 MG. Labs are ok, CLL controlled but I dont feel fine, with dizzy, nauseas,general discomfort, fatigue and the worst is confussion and brainfog. Do you think I Could to ask Doc to reduce to 140mg. Thx.
Per Dr. Furman at Cornell Wilde medical center, “I would not recommend 140 mg/day of ibrutinib if it brings your dose to below 2.5 mg/kg, as it will be a subtherapeutic dose.
Let me add that that would mean you would need to weigh 123 pounds or less to be an adequate dose of ibrutinib at 140 mg a day.”
Any doctor who answers you “I mentioned Acalabrutinib to her doctor but he thinks there are not enough data on it to be safe” is not up to date, in my opinion.
I wish you both luck and good health. You seem very invested in this doc. I’m not adding anything positive to this discussion, so I will wish you well.
I trust French doctors more than Americans because they are not influenced by the insurance company in their choices and the FDA will approve anything if the price is right .
1) it has been approved and is being used by thousands of CLL patients for several years. It is not yet approved by the FDA for CLL but 75% of the scripts in the U.s. have been for CLL patients.
2) Most of the acalabrutinib use has been for cll patients who cannot tolerate the side effects of ibrutinib.
3) research to date has shown that acalabrutinib is safer than ibrutinib. The afib issue is the most important consideration when reviewing the risk/reward profile of ibrutinib.
By way of background, i was on ibrutinib for five years. took the full dose for 4 years until the side effects became intolerable and my blood levels had plateaued in the safe zone for several years. One of my hemocs recommended acalabrutinib and my insurance company approved 18 months ago, but my other hemoc suggested moving to venetoclax to avoid the blood thinning tendency of ibrutinib and acalabrutinib.
Venetoclax is an extremely powerful drug, especially for folks who still have a lot of tumor burden. the dosing protocol for V is pretty strict these days and should be closely followed. for the first month of use a lot of hospital time is required. happy to provide more details if you want.
Hello Sergi, We are also in France, but my partner is having his treatment in the UK (long story, we want to move his treatment to France at some point). He has been on Ibrutinib for the past two years. He has been told today that it is no longer working. He is very upset and crying. He has been told by his UK consultants that he might have to have chemo again. He has also had stem cell treatment using his own stem cells. With all the advancements in Cancer treatments recently I'm hoping there is another drug they can put him on. I also want him to have a second opinion from the French doctors, as I realise the NHS in UK is so stretched and can't afford many of the drugs on offer. I hope your wife's CLL doctors will help her. Any help or advice you may have would be most appreciated.
I think there is a lot of truth to that finding (that has some research behind it) of 2.5 mg of ibrutinib per kg of body weight being the minimum therapeutic dose necessary to get the job done. My low dose of 140 mg a day was working for me (or so it seemed) until both cancers were brought under control and my weight rebounded ... putting me over the weight limit for 1 pill a day. Then the ibrutinib was no longer fully controlling my CLL at 1 pill a day, and I felt 'sick' in various ways, and neutrophils could not recover... until I increased to 2 pills a day and it all got fixed.
The biggest problem my wife has lately with ibrutinib is heavy blood loss during periods which makes her weak and then triggers Lyme disease resurgence
I had success on 140mg per day, my numbers dropped to normal limits. Had to switch to acalabrutinib due to side effects even on the reduced dose. It was important to do more frequent labs (monthly) to be sure the lower dose was working, but it all worked out. I would have stayed on ibrutinib longer except for feeling like i had full body arthritis.
18 months ago one of my hemocs suggested switching to acalabrutinib and the insurance company approved. Note that most of the Rx for acalabrutinib are for cll. Therefore, it appears many insurance companies are paying for this off label use.
Many docs rely on what they know and what has the most research, which in this case is ibrutinib.Getting a second opinion from a CLL expert at a research center may be a good idea?
I was in remission and controlled for 5 years on 140 mg per day. Started at 420 mg and was reduced. I weigh 185 pounds. Added Venetoclax per clinical trial this January. Alls well.
Yes. I was kept in remission quite nicely with few side effects at that dosage for about 5 years. I was allowed to remain on 140 mg and just add venetoclax for the 2 year study. Feel great.
I had FCR chemo 6 months in 2010. Remission 3 years. Relapsed and Ibrutinib after that until venetoclax added January 2019. I am currently on a study at MD Anderson. On 140 mg Ibrutinib plus 400 mg venetoclax. Doing well and I’m in remission. We felt I was starting to break out of remission before the study although WBC was under 10000 and was asymptotic.
Hi Sergi, I was started on 420 mg dose of Ibrutinib as second line of treatment after a 2 and a half year remission with 6 rouunds of fcr. I did well the first few months and then my dose was reduced to 240mg due to low neutrophil count. After a few months my neutrophils dropped again so my dose was cut back again to 140mg. I have been on this dosage for the past year or so and doing pretty good(paltelets are borderline and neutrophils are in lower range but holding. My weight is around 150lbs. Unfortunately I was never tested for various deletions prior to treatment which I now feel was negligent on my oncologists part. We all seem to react differently with these treatments but my personal opinion is it's a good thing if less medicine is needed to achieve the results hoped for.
I was diagnosed almost 2 years ago with 17p deletion, 53 mutation. After a couple of months on 420 of Ibrutinib I reduced to 280 (due to severe joint pain) , then finally to 140 and have been on 140 for a year and a half. The 140 has worked well, with no evidence of disease in my blood, but still 20% CLL cells in my bone marrow. They added a low dose (because it was all I could tolerate) of Venclexta, 50mg, the first of this month. I’ll go in the first of December for a bone marrow biopsy. I’m not sure about going back up to 280, but I wouldn’t think there would be a problem with it. Hope that helps and all goes well for you and your wife.
what was the low dose of V you are taking? did the docs/hospital start you at 20 mg/day and a week later try 50 mg, then a week later try 100 mg? the standard dose is 400 mg/day....just curious.
I have had CLL since November 2017, and I have gone up and down on the Imbruvica three times - from 420 to 0, then to 140, and back to 420. No problems for me at least.
Seeing what works for your wife is a reasonable strategy. Everyone's metabolism and lifestyle varies. Yes, there are trials to determine dose but they end up as a one size fits all recommendation. Mostly phase 2 trials determine dosage and they are not done with the large numbers of patients that try such dosage in phase 3 trials that check out mostly efficacy. I personally tend to get along with lower that recommended dosage on many drugs.
But if one is to personalize a dose of something, there must be monitoring.
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