I was wondering what people's opinion was for FCR vs imbruvica first line for moderate risk (unmutated, +Zap70, normal FISH for me) patients. With my genetics, I should expect a average response ~5 years with FCR which is the recommended standard treatment per current guidelines.
I feel like I am a common sense type of person. When I see Dr Furman bring up issues like clonal selection/evolution. The FCR possibly causing mutations. The possibility of other secondary cancers down the road due to patients living longer now. Bone marrow function reduction ~ a year after. There are small considerations like most likely not needing an iv port. Going through a 6 month chemo regimen would be harder on home life as well.
There is a part of me that feels as a a youngerish (45) patient in good health, I would respond well to imbruvica and get many years out of it. I could potentially make it to the completion of a lot of the multi-drug combo trials currently going on. I feel these new combos are going to make a big impact on future treatment guidelines. The picture above is 3 year PFS. The blue line is treatment free, and the yellow is relapsed/refractory patients. 95.8% of first line use is PF after 42+ months.
I am particularly interested in the opinions of patients that have been through FCR and if they would have done it if imbruvica was an option for them. FCR for mutated and 13q is the easier choice. I am meeting with my oncologist soon and this is going to be my main topic of the visit.
I am looking into that as well. I checked into Venetoclax in Combination With Obinutuzumab and Ibrutinib, but they are no longer taking treatment naive pts. I look forward to seeing the results of that trial.
Your first treatment is always the most important they say.
I am surprised that FCR would be considered given your genetics. I am unmutated and MD Anderson said that it would be unconscionable to put me through FCR with its side effects knowing that it would eventually fail. I was 60 years old at the time and also treatment naive. At the time ibrutinib was not FDA approved for first line treatment. Fortunately, I got into the ACP-196 drug trial.
I think your logic is correct. Ibrutinib buys you time for better treatments down the road. That is how I view ACP-196.
I took Ibrutinib as a sole agent on a clinical trial as an alternative to FCR. It worked brilliantly for two years, but recently I have had to suspend taking Ibrutinib as it has caused lung damage. Chemotherapy awaits.
I don't regret trying Ibrutinib and would make the same choice again. But I would advise that if you go onto Ibrutinib you do so with your eyes open, recognising the risks.
I thought I remember that if someone progresses on a BTK inhibitor that others would not work. If side effects stopped treatment the pt might tolerate another BTK-I and continue to do well.
I agree with some of the other comments. I am also unmutated and MDA felt that FCR was not an option due to short remission times and side effects. I will be starting ibrutinib this month after 6 yrs w&w. They also offered a trial of ibrutinib and venetoclax which may be if interest to you. Wish you the best on your journey.
I would love to try that combo, but there is no location close enough for that to work for me. I am pretty much looking at ibrutinib, hoping venetoclax combo therapy will be approved down the road..... Currently looking into BGB 3111 in Combination With Obinutuzumab.
I was told about this trial when at MDA a couple months ago. Logistically, you basicially have to plant yourself in Houston for four month stretches in it. None of the drugs are covered by the trial...it all goes to your insurance. It would make sense if one/you lived in Houston. Perhaps this combo will be approved at some point after initial treatment for us.
I faced the need for treatment before the newer drug options like Ibrutinib/Imbruvica were available. I was adamant in wanting to avoid chemo. I had all "good" markers being 13q-, IGHV 6% mutated, CD38- and a ZAP-70 pos test which CLL experts judged not accurate in part for where it was done. I chose FR to avoid an alkylating agent (Cyclophosphamide) yet FR nearly killed me resulting in permanent kidney damage. Not only that but a 2nd try at therapy with Rituxan monotherapy put me in hospital brought in by wheelchair. 10 months later I had a SCC (Squamous Cell Carcinoma) removed from my shoulder. Maybe I would have gotten the SCC anyway but suspicious in timing.
Bottomline, our responses are unique and mine to FR was rare but that is no consolation when you are the one with the bad response. You are going to a great Clinic with a great Onc who can guide your journey without the need for chemo based therapy. No one can predict in advance of any drug use that you will not have side effects that are unmanageable with a need to switch but you are so fortunate to have a non chemo option under the guidance of a CLL specialist like Dr. Furman it is a no brainer from my patient prospective.
One last thought - At OSU where I go, Dr. Byrd told me there are virtually no relapses of frontline Ibru treated patients who do not have the bad markers of being 17p-, p53 mutated, 11q- or CK (Complex Karyotype). Some patients might have had to be switched because of side effects but this is stunningly good news for patients. Justasheet1's comment is a very important consideration in your decision.
WWW - 63 months on Ibru not without troubling side effects in the first 10 months but doing great since May of 2012.
Thanks for the reply. I saw Dr Flinn in TN for my specialist visit. I have not had the opportunity to see Dr Furman. I would also like to forgo any chemo. The other side is response e to a BTK-I in relapse is lower. Talking to my Onc at the end of the month. Pretty set on a BTK-I.
For those of you following. Saw my primary, he was still pro FCR frontline and wanted me to have ibruvica available down the line. He was ok with me choosing either one. I was still leaning against FCR. I went and saw my specialist Dr Flinn at Tennessee Oncology to make sure I was making the best choice for me and my family. He was ok with both, maybe a little less on the FCR side. He brought up that they were starting a Ibruvica and Venetoclex trial in Nov or Dec. I am going to go with the trial if I can get in. I am 45 and fit otherwise, so hopefully I will get in and tolerate them well. I will post a separate thread if I get in......
3 doses (Ibrutinib) and don't really feel any different. Hives are my primary symptom of CLL. I have had one moderate bought in 3 days, but that is not outside the norm. I think by week 2 I will have an idea if the med is affecting the hives. I used to barely drink any water, about 10 days ago I started trying to get a gallon in a day. This may be helping keep side effects down.
As it is a gov site, I would guess they lag with trial updates. I am the first person to be accepted at the TN location. I believe they are recruiting a total of 150 people (overall studywide). I am not sure how many slots are filled. I drive 2 1/2 hours to participate, some of the visits involve a very long day. When I go back I have to have drug serum levels drawn at different hourly intervals. The link has the 2 points of contacts for the overall trial. They might have some insight if any other sites will be added. I only found out by chance. My primary hem/onc doc wanted to do FCR, I was leaning towards Imbruvica. Went to Dr. Flinn for expert opinion and he tod me the trial was in the works.
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Health Canada approves Ibrutinib plus Rituximab for First Line Treatment of Patients with Chronic Lymphocytic Leukemia (CLL)
Ask the expert Ohio state talk. Slide 46. PFS for treatment naïve patients on imbruvica Vs TN FCR patients. 
FCR, FC, or F
stopped imbruvica
