Deciding on next steps for treatment


I am a 65 year old male (living in U.S.), diagnosed with CLL about 5 years ago. I have unmutated V H genes, a more worrisome diagnosis. I was in watch and wait mode until a year ago, when counts began to take off. I started treatment in July, combining chemo (FCR) plus a clinical trial of a novel therapeutic agent (Duvelisib - a PI3K inhibitor somewhat similar to Idealisib). First round of chemo went fine - some nausea and vomiting, but quickly controlled and felt great right after that up until round two. I developed high fevers about a week after round two that caused me to be hospitalized. I ended up spending 25 days in the hospital, as once the fevers were under control (about a week), my blood counts dropped so low (neutrophil #.01, platelets 10) that I was at a high risk of infection (got IV antibiotics all during my stay).

Fortunately my numbers finally began to rise again - they were beginning to talk about a stem cell or bone marrow transplant. Neutrophils at last test were 1.08 - still low but gradually climbing - and platelets at 379.

The question is what to do now. My doctor presented me with the following options:

1) continue on the combination of FCR and clinical trial, but at reduced dosages

2) continue on just one of the above - just FCR or just the Duvelisib

3) do nothing, as my bone marrow biopsy shows only about 10% CLL cells. I was told that I would probably have to start treatment within the next two years.

My wife and I have been reading a great deal since then, and have seen some articles by doctors who recommend avoiding chemo if at all possible. I decided to consult a second doctor, and he recommended doing nothing because he said the FCR clearly was very difficult on me and I was lucky that I did not have some dangerous complications - and there would be no reason to take the novel agent as I don't need treatment now, and by the time I do, there will probably be other options.

We are leaning towards that option, but wondered if some of you might weigh in. Thank you in advance for your thoughts.


13 Replies

  • Hi Rick-

    We all know each of us is a different chemistry set-we're not a one size fits all group. So all these important decisions are mostly our own and I've come to rely on experienced 2nd and third opinions and my fellow cll'ers on this site.

    Once I have some info I try to see what comes close to my deepest gut feeling.

    I agree with your 3rd option. If it were me and I had no symptoms or high numbers I'd wake, and I did, till they both got nasty, my doc called and said it's time and it was.

    I just finished a year of chlorambucil helped but we need to start a new therapy in Jan. I'm taking a couple of months off to get the old chemo out and try something new and mo' better.

    There are folks in this group who are way more knowledgeable and experienced than I so keep your eye out for some good info.

    best of luck-


  • Thanks, Bill

  • Did you see a CLL specialist?

  • Yes - my doctor is a CLL specialist.

  • If you are comfortable with them, I would probably go with their opinion. I am currently waiting to get into a trial myself. Best of luck with your decision.

  • Hi Rick,

    Where are you getting your treatment? I just finished 2 months ago that same combination ( fcr and duvelisib). Going tomorrow for ct scan and bone marrow biopsy. Can tell you more after the results.

    Good luck!

  • Hi,

    I would love to hear about your results, and about your treatment - i.e. how many rounds of FCR, any side effects like low counts, fevers, etc.

    Thanks for your response. Good luck tomorrow.

  • Are you close to NY?

  • Yes - a few hours away.

  • If you are willing, a 2nd opinion in NYC might help you decide. Dr. Furman at Weill Cornell NY Presbyterian has the most experience with Pi3K inhibitors, and is opposed to Chemo except as a last resort. Dr. Lamanna at Columbia NY Presbyterian trials Chemo and targeted agent combos. Either would provide lots of knowledge and input to help you decide.

    PM me if you want their contact info.


  • Thank you, Len. Having seen two doctors now - with slightly different opinions - I think I will see what my doctor says when I meet with her next week. She is a leader in the field (Dr. Brown at Dana Farber), but I want to see why she recommended that I continue on with chemo. From what I could find out in my searches, there is not much data about how patients with unmutated V genes do with FCR, and given my experience with the second round, I'm wary of starting back up.

  • Here is a link to a good video presentation by Dr. Furman. About 2 mins 10 secs in there is a slide with IGHV status in response to FCR. This is from the FCR 300 trial. From what I have seen many CLL docs are moving away from FCR if you are unmutated. I am also unmutated and had the FCR dilemma. I am most likely not choosing FCR. I am waiting for a trial to open up in November. If you click on my name you will see a FCR vs ibrutinib thread. Best of luck in your decision.


  • Thanks, Nathan. I read your other post and the replies. It sounds as though you have been given the same type of advice by two doctors - one advocating FCR, the other more open to alternatives - in your case ibrutinib or another trial, in my case w & w, since I had already started FCR. I'm not as young as you - 65 - but I am quite fit and healthy in all other respects. Even so, the FCR really hit me hard. Good luck with getting into the trial - sounds like a good option for you.

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