extreme fatigues, consistent Upper Respiratory infections/lack of healing (I think this may have played a part, example, I cut my foot in November, it still wasn't healed in Jan. properly & ended up having 2-3 rounds of super strong antibiotics, get a bruise, takes 2-3 months to heal etc.) Anyway, he advises due to my age to do a trial of either Ibrtinib or something else with an I (I forgot what, I have about 60 pages to read before my next apt. in July). He basically said that it made more sense because if the trials didn't work then I could switch to normal chemo.
BUT I'm confused, with a trial you don't know if you get the medicine right? Also either way what about work? I wasn't able to really find about any side effects etc. with the Ibrutinib. Has anyone been on it? What can I expect?
THANK YOU!
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rlyndecker
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Your doctor is quite right, when it comes to treatment our first option should be a trial. Also, you can ask for a second opinion or a referral to a specialist if you don't have one.
I suspect that the drug in the other trial you mentioned beginning with I is Idelalisib. Some trials are randomised and you will be 'randomised' into one arm or the other when a new drug is trialed against a standard drug, it's a roll of the dice!! and a gamble. For example, I am on a randomised study of Ibrutinib versus chlorambucil (the standard drug for over 65s) and fortunately landed the Ibrutinib arm. There is, however, crossover, in that participants who do not do well or progress on Chlorambucil can crossover to Ibrutinib.
If you check out the menu on the right 'Treatments and trials' you should find some info on current trials.
You need to give more info about your situation, at least where you are geographically.
Obviously, if you are in a Imbruvica (ibrutinib) / rituxan trial the side effects would be different.... you would need to add the rituxan side effects to the list as well...
Most side effects with Imbruvica (ibrutinib) are quite mild and limited to a few weeks or months, rituxan side effects are different and include infusion reactions often seen only at the first infusion.
You often don't know what treatment you are getting in most Phase 3 double blind trials, but should your treatment fail there is often a cross over to the other arm or arms of the trial. It solely depends on how the trial is structured.
These are issues to discuss with your trial co-ordinator...
Sorry I am in the middle of nowhere in CA but the two trials are located: one UC San Diego and the other Stanford CA and yes the other trial is Idelalisib. I don't think I can do that one though due to location, it would add a lot more stress, even if I relocated. I just really like the Dr. at San Diego.
I am only 40. I have seen 2 CLL specialists: 1 at Stanford & 1 at UC San Diego; I like both, I am now due for my apt. with the Stanford Dr. I just had my apt. with UC San Diego and I knew going in that the issue would be location. I am over 300 miles away from him; the other specialist is at Stanford- a little closer ~120 miles away. There isn't a specialist near me and the Oncologist (Hematologist?) I saw locally, well I won't go into details but I refuse to see him ever again.
That's why I am trying to find out as much details now before my apt. in July because if he agrees with the San Diego Dr., I want to be prepared with questions and right now my head is spinning because everyone I know just had regular Chemo.
I will look at the link posted above and to the right, thank you!
Find out how frequent the check-ups will be for the trials. I live about 300 miles from Houston where I am treated. Stayed there the first week but the check-up rate tapered off pretty quick. About once a week for the first month, then once every 2 for a couple more. Think it then shifted to once every 4 weeks and after 6 months went to once every 12. Some times I drove and sometimes I flew. After the first month the side effects -- almost entirely diarrhea -- were very infrequent so it was no problem to drive down the day before, have my checkup the next morning and drive home that afternoon.
Of course, we have 75 & 80 mph speed limits and I have a fast car and a good radar detector ...
you haven't had a training course or studied CLL at college, so the whole thing is a shock and completely overwhelming. Give yourself time off. Go to the mountain top, the longest beach, the biggest forest and relax... you will be able to return in 10 years and if not 20 or 30 or more, so things are not quite as bad as they were with the drugs available 10years ago.
2) Ibrutinib vs regular Chemo
By most criteria, Ibrutinib is much more effective and has less side effects than regular Chemo so it is a big improvement if you can get it.
(I had regular Chemo for my first treatment 3 years ago and just started Ibrutinib (alone) for my second)
3) Treatment vs trial
Most people have received Ibrutinib through a trial since most governments haven't approved it. Trials are usually more demanding for the working person (me) because there are many more tests needed to fit the demands of the independent demands of running a trial. Some trials compare two new treatments... others compare a new treatment with a placebo, though the doctors monitor you carefully to check that you do not deteriorate (if you are on the placebo)
Actually for CLL patients, I can't off hand recall there ever being a trial involving just a placebo on its own for comparison. Placebos are used however, in conjunction with another known drug that does show activity against CLL. I guess one of the benefits with CLL and the standard Watch and Wait approach (because until very recently, treatment didn't actually extend survival time), is that when you get to the stage of needing treatment (and hence are eligible for a trial), ethically you can't be provided with an ineffective treatment. So when a placebo is involved, it's to determine whether the dual or triple combination with the agent under test is more effective than the standard treatment without the new agent. That way the patient (and most likely those conducting the trial), don't know who is taking the placebo and who isn't. So to summarise, in CLL trials, typically you will be given a known effective treatment or one that is expected to be as good as if not better than the effective treatment. Where there's a cross-over option, if the new treatment looks to be far better than the comparison treatment or the patient doesn't do well on the reference treatment, you may be given the option to swap to the trial arm for the new treatment.
Your health and progress in a trial will also be considerably more closely monitored than if you are not treated within a trial. The downside of that of course is more of your time getting jabbed, squeezed, scanned, filling out forms, etc.
I am also from the states and currently trying to plan out for what course I'd take when it comes to course of treatment. If it happens that I need treatment in the next year or so I have to determine whether I will stay with my current oncologist who has already (???) determined that he'd start me on chemotherapy (FCR), or if I'd look to a trial to avoid chemo instead. A third possibility, my preferred and one that maybe you could ask Stanford and San Diego about, would be to find a doctor who is willing to prescribe front line treatment of these oral kinase inhibitors off-label.
To that possibility, in today's email notifications, there is a link of a video of Dr. Richard Furman (patientpower.info/video/exp... who mentions that he prescribes the drugs Ibrutinib and Idelalisib off-label as front line therapy (@ 7:45 - 8:15) . He prefers all his patients whether old or young, naive or relapsed, or whether "able to handle chemotherapy" or not, to avoid the possible short and long-term cytotoxic effects of chemo. He advocates for his patients in trying to get insurance cos. or manufacturers like Pharmacyclics and Gilead to cover the expenses for these meds that are yet to be approved for front line therapy; he mentions that he was able to obtain coverage for all but one of his patients.
Here's a Jan. article which first brought his name to my attention in which it also mentions his treatment strategy. weill.cornell.edu/news/pr/2...
Anyway, this has led me to ask the question whether there's any local doctor with the same ideology as Dr. Furman so I no longer have to entertain the possibility of moving to New York to become his patient.
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Well the results are in. 
A little nervous 
MRD Negative in the blood and CR on MRI after 9 months from Imbruvica plus Venetoclax Clinical trial. So far so good... 
Ibrutinib to acalabrutinib
