Relapsed CLL

Hello! I was initially diagnosed in 2006. Stage 4. After 8 doses of Rituximab, I have been m in remission...and have remained in total remission--- until July of this year. At my July 2015 visit to my Oncologist, we discovered that my CLL has "returned", seemingly with a vengeance! I am scheduled to have 6-8 doses of Rituxan again. My questions to all of you who may have undertaken this 'relapsed CLL' journey... Will the Rituxan be more toxic (cause more serious side effects than my previous rounds back in 2006? Is there anything I need to do to prepare for this next level of my CLL?

Thank you all -- mostly for just for being here. It helps so much to have a wonderful community of fellows who understand EVERYTHING I am going through and can share their experiences and support!

9 Replies

  • Hi. I'm surprised you only had rituximab, and pleased for you that you were in remission for a long time. I had FCR in 2007 and then again in 2012, but it didn't really work well second time. My experience of rituximab was similar. 6 times in 2007, 5 in 2012, 4 in 2013. I got the rigours on the first infusion, but after that I think the main side effect is the drowsiness of the piriton is it not?! I'm starting obinutuzumab and ABT199 on trial soon. Will be interesting to see how o compares with r. I'm hoping better! Although r seems to be excellent.

  • Hi I had relapse cll and trailed apt199 on its own at the christe hospital in Manchester in full remission now no side affects been over twelve months so all is good hope your on the mend soon and good luck ok

  • Sorry to hear that you have relapsed!

    From what I understand (I have no experience of this) from reading and discussions with others the same treatment after relapse works but is likely to have less time in progression free time. In other words it is likely that your next remission will be shorter.

    You have not given much detail in your post on your condition or any comorbidities etc. And I note that you have not restricted this post to the community.

    It may be that if you restrict the post and give a more detailed description others would be able to recommend some actions For you?

    I would be interested to hear why your medics are only suggesting retuximab as a treatment again as with the new drugs and the combination drugs there may be a much better treatment that would give you a longer remission. However, there may be good medical reasons fit just rituximab being offered.


  • Wow, how blessed you are to have been in remission for so long. First treatment was with Rituxan and Cytoxin - remission lasted just under two years. Since then, I have been treated with Rituxan and Treanda twice. Over all, I feel this is easy treatments with few side affects other than skin issues for me. I did not notices anything being worse than first or second time. Just wish I could get the remission rate you got. Good luck.

  • I hope you are seeing a CLL specialist who might be more familiar with newer treatments. Good luck to you

  • I would get a second opinion on the treatment plan. I do not understand why your oncologist isn't suggesting ibrutinib, idelalisib or idelalisib plus rituximab. In this day and age rituximab alone as a therapy is a bit antiquated and may not be your best option. Also if I were in your position, I would look into clinical trials. There are many going on right now that are looking for relapsed cll participants.

  • Please be aware, that rituxan monotherapy was never approved for CLL. It is also being surpassed by both Arzerra (ofatumumab) and Gazyva (obinutuzumab).

    The more you use rituxan, the less effective it becomes as the target, CD20, becomes depleted.

    You need a second opinon...

  • I agree with the others. You need a second opinion. My first treatment was Cytoxan, Fludarabine and Rituxin. It was very effective and put me into remission for 6 years.

  • I had a 3.5 year remission with FCR that showed beginning relapse in May this year. My local treating oncologist and my CLL specialist second opinion agreed on the initial tx, lending confidence right from the start. My treating doc has been tracking my relapse and immediately said that when the time came for treatment again(in a year or so) that I should enter a BTK or similar single or combo trial. Said direct treatment with one of the new novel drugs would be fine, but recommended a trial investigating one of those vs a potentially even better combo. Suggested a phase III of which there are now many. Your friends here correctly suggest second opinion of a CLL specialist. How close are you to a research center? Some travel would be well worth it. Second opinions are readily available there.

    Best to you in keeping our beast at bay.


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