FCR relapse. Thoughts on ibrutinib?

I finished FCR about 8 months ago and it gave me a partial remission. My recent scans show that my nodes are growing. Blood counts fine for now. Dr expected a longer response. Will wait 6 more months and likely start ibrutinib. I'm nervous that won't work and then what? Also makes me worry about being on something the rest of my life. We used to think we had a 30 year plan with this disease and now I'm worried I have fewer years. I'm 54 . Thanks for any thoughts on what it's like on ibrutinib and what happens if this one fails.

9 Replies

oldestnewest
  • Fenway

    Sorry to hear this.

    However, I might be being a bit thick but cll should be showing in your blood way before the nodes start to swell? It is the cll cells accumulating in the lymph nodes that cause them to bulk up. Yet you say bloods are ok ?

  • I'd say that it would depend on how Fenway's personal version of CLL expressed itself as to whether it showed in the blood or not before nodes started to swell. We are all different and how our CLL expresses itself after treatment may vary from how it did before, depending on the (newly?) dominant clones...

    Fenway, given you didn't have a long remission after your FCR, you won't want to try that again and if a non-chemo treatment like Ibrutinib is available for you, go for it!

  • Hi Fenway. After fcr my opinion is that ibrutinib is the next one to try. Much more tolerable and easier than fcr. Good luck.

  • Fenway .. I was diagnosed with SLL in 2013 in lymph nodes & bone marrow. Initial treatment in 2014 with Rituxan & Revlimid. Scan at 3 months showed no response so dr switched me to Rituxan & Ibrutinib. After 3 months on ibrutinib, had significant reduction in lymph node sizes. Still taking ibrutinib ... hats off to all who helped pioneer it. Over 2 years now on ibrutinib, and I plan to ride this horse as far as she'll take me. LynnB1947

  • Hi Fenway,

    Lots of folks do well on Ibrutinib, and get several years of fully normal life. They are likely off enjoying that life, and not often posting here. A much smaller percentage of us did not do well on Ibrutinib due to side effects.

    I see you are in the USA, we don't know your prognostic markers, but with primarily nodal involvement - SLL like progression and the short remission, you may be like me- UNmutated with Trisomy 12, or one of the less desirable markers.

    So you may get a much deeper remission on Ibrutinib and as long as you take Ibrutinib daily, you may get great results. If you are in the small % that has more troublesome side effects there are lots of other Non Chemo choices in the USA. I know them well- having personally used Idelalisib (Zydelig) , Rituxan (Rituximab) and Venetoclax (Venclexta). There is also Gazyva (Obinutuzumab), and soon to be approved Acalabrutinib (ACP-196), with several more in clinical trials and may be approved by the time you need them.

    I hope you are seeing one of the top CLL experts for a 2nd opinion. But if you have not done that yet- now would be a great time to get to one of the top CLL research hospitals like: MD Anderson Houston, UCSD San Diego, OSU Cleveland, Dana Farber Boston or my personal favorite Weill Cornell NY Presbyterian New York City. Having one of these major centers in your corner will greatly expand the options available to you ("more runway") and dramatically improve your overall survival. Let us know more about your location and current medical team, so we can suggest additional resources for you.

    Len

  • Thank you so much. I am waiting for my P53 marker but my other markers are good. I have been at Dana Farber and am considering another location so I'd love ideas. Maybe at Cornell?Thank you Len and everyone for your suggestions. I'm trying to learn as much as possible.

  • Duh- I should have guessed Boston with a moniker of Fenway- LOL.

    Dr. Jennifer Brown and her team at DF are well known for their research on CLL. You may want to develop a detailed list of questions for your next appointment and record the entire discussion on your cell phone. The should have a few clinical trials to consider.

    If you want to come down to NYC, just send me a Private Message and I will give you the contact info for Dr. Furman's team at Weill Cornell.

    Len

  • Hi there, I have to enjoyed a very short remission after my first line FCR treatment. I am in my 40-ies. Since the strongest chemo coctail did not do the trick, I would be hesitant to try any other chemo treatment because your second remission will be bound to be much much shorter than the first one. There are non-chemo options: Ibrutinib, Ventoclax, Idelalisib and few others which seem to be working very well according to data available and which are non-chemo treatments. I for one, am going to explore these myself. These meds are good because one can be tried after the other failed. If all fail eventually, and I hope they won't, I have been told the BM transplant conversation is one to have at that time ...

    Andrew

  • Thank you so much. I am getting several opinions but it looks like Ibrutnib alone or possibly with Ventoclax. Thank you everyone!

You may also like...