I have been dealing with CLL since 2003 and had various chemo treatments, last being Treanda/Rituxan combo that knocked it down for a bit Roughest time I had was my spleen swelling on me, which has happened twice. The first time I recall severe pain, like having a knife inside me and someone twisting it. It took narcotics to make it tolerable. Second time my spleen went goofy seemed to happen for no reason, being that I was taking Imbruvica. This seems to be a great maintenance drug but the discomfort I get in my joints seem to be the main side effect. I never get any swelling/inflammation.. but more just achy which seems connected to level of activity. NSAIDs don't phase that, so narcotics dull that as well. Really getting tired of pill to pill existence and wonder it anyone changed from imbruvica to * ACT196 (going from memory here). From what I recall reading its similar to imbruvica but doesn't stay in the bloodstream long and maybe less side effects?
Change from Imbruvica??: I have been dealing... - CLL Support
Change from Imbruvica??
ACP-196 is Calquence (acalabrutinib), it is similar to Imbruvica (ibrutinib), but in clinical trials, appears to be better tolerated.
Its not FDA approved yet in tne U.S., so clinical trials would be the current access. It should go shortly to the FDA, so might be approevd by late fall...Not sure where it is with the EU, EMA..
Another option, which has been great for me is Zydelig (idelalisib) and rituxan, and in the U.S. venetoclax would be an option for you.
Zydelig (idelalisib) is not great for everyone, especially in the spleen department, there are a few friends of mine on HU, that had some trouble with it. I don't want to overstate my case.
~chris
Hi Chuckh,
If you are in the USA, the far more popular option is Venetoclax, and many trials have Ibrutinib first and Venetoclax second, with some overlapping. Venetoclax was approved in April 2016 for people with 17p. But some of us are getting it off label or in clinical trials.
I started Venetoclax in June 2016 and several other regular members here and on the CLL Forum have reached MRD negative in less than one year, some have stopped treatment and did not progress. I tried pausing Venetoclax but within 4 months I restarted, since my MRD zoomed up to 1%. I am doing fine with no side effects and great control of my ALC.
Len
Len,
Are you on Venetoclax as a single agent?
Kim
Yes, I am on Venetoclax alone. I got excellent response. The combination of Ibrutinib and Venetoclax seems to work very well for many more people than either one alone, but Ibrutinib gave me a serious skin rash, so the combo was not an option for me.
Len
I've been on ibrutinib since Oct. 2016 and had my share of side effects. I'm on a low dose of 140mg now and maintaining. Hoping to start Venetoclax in May after my next appt. at MDA. Apparently it is covered by my insurance, so that's good news.
That sounds VERY interesting to me. I will do a lil homework and ask dr. if there is any reason for me not to try that. Living from pain pill to pain pill gets old. Again...many are worse off and at least I am stable but if there is a better option I want to try it...meanwhile kick this addiction Im sure to have after all these years. Many thanks!!!!!!!!
If you are on Medicare and/or have any problems getting the costs for Venetoclax down to affordable levels, ask your CLL expert doctor to process the paperwork to get Genentech Venclexta Foundation to supply the drug free.
You can call: Genentech at 800 530 3083 and ask for a Venclexta Foundation Specialist, to confirm if you qualify and then get the one page application started with your doctor.
Len
Good info to have!! Currently Im insured but that situation is about to change.
Glad to hear you are doing well. Honestly my issue I guess is I don't fully trust doctors any more. I "fired" one when I caught him trying to deceive me during a clinical trial. With doctors getting kickbacks from pharmaceutical companies their motivation for prescribing certain meds becomes suspect. Of course I'm a lot better off than many dealing with CLL, but I feel there must be a better option than Imbruvica for me. Indeed it keeps the white counts down and bringing the dose down from 420mg to 280 per day made the joint discomfort somewhat less. Looking thru some of the other post I found a few others that had dose adjusted. Seems I recall one that dose was 140 mg every other day and still maintaining good control, and wonder why my current dr. hasn't lowered my dose. Also wonder if there is a better way to keep the joint discomfort down other than masking it with narcotics, with their own set of problems. Again, thanks for the input.
Chuck,
I'm on a dose of 140 mg daily and doing well. Still experiencing stiffness, but it's less at this lower dose.
Kim
Hi Kim... curious where they started your dose? 420mg??
Started 10/16 at 420mg, decreased to 280mg after 7mos, then to 140mg after 15mos. Response has been good, my WBC is on the high end of normal, ALC slightly elevated, no nodes on CT. I had some pretty brutal side effects on the initial dose, but they've been improving each time the dose was lowered. I do have to get monthly labs now with instructions to return to 2 pills if my numbers start to climb.
Please ecplain the "kickbacks" comment. I thought that was illegal.
Run you doctor though the disclosure database...
Dollars for Docs
projects.propublica.org/doc...
Incentives can be all types of things...
Seems like it should be.. but I guess their are ways pharmacies can give doctors incentive.
I know they've tightened that. I dont think they can even get a free pen now....at least my MD brother tell me this!
Gotcha. I didn't mean to start an avalanche of mistrust here. The one instance I did nail down with one of my previous doctors did leave me a bit sour. He had an agenda other than treating me that's had me baffled to this day. Pity was, I liked that doc (up til then) and totally trusted him. Once burned............
Again, all things considered.. for as long as I have dealt with CLL I'm in pretty good shape but looking for maybe a better option.
Awful mouth sores, lip blister from Imbruvica
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