Remission after Bendamustine and Rituximab

[snowdroprose]

I've not long completed treatment with Bendamustine and Rituxumab (FCR back in 2015). I'm now recovering, which mainly means getting my bowels back to normal. My bloods are good and expected to improve. I just wondered what is the average time in remission, after this treatment. Does anybody know?

[Jacksc06]

Hi. Everyone will have a different remission period. There is as far as I know no average. I personally lasted around 18 months but that was just me. Wishing you a long remission Regards.

[snowdroprose in reply to Jacksc06]

Thanks for your reply. It's just that I read that FCR has an average remission period of 3 years and that was exactly what I got. I wondered if I would be the same with B/R. xx

[cajunjeff]

The average remission is different for front line vs a second or third therapy. Front line BR gets a 3 to 4 year remission vs a 4 to 5 year remission for FCR. If one is taking BR as a second or third treatment the progression free survival remission would be less. Mutation status and Cll type factors in. Those with mutated Cll do better, so they can expect longer remissions on average and vice versa.

[Ballyhoo77]

I Guess I'm lucky or just Blessed. IN December it will be 11 years remission.Hope you have a very long Remission.

[Jemorgen in reply to Ballyhoo77]

Good news and gives me hope. Thanks!

[GMa27]

Average remission with FCR mutated is 6-10 years. Are you mutated?

Everyone is different.

So far I am in remission 11 months from FCR. Hopefully that 10 year remission is my future.

BR averages are shorter. There are always exceptions! 💕🙏

[Fulart]

I started B/R in April 2015 and was in remission for 2 years. I have CLL/SLL and was in a watch and wait mode for just over a year. Today I'm on a BTK inhibitor, acalabrutinib 100mg 2x a day. I can see from all our replies, we do not seem to be forming an average for B/R My doctor said at the time of my B/R treatment that it could last 1 to 5 years or more.

[JuciyJ]

I finished BR in Jan 2018. My ALC has been creeping up since Aug 2018. They were 21 yesterday so when it gets to 30 I am suppose to start another treatment.

[AussieNeil Administrator in reply to JuciyJ]

I recommend that you seek a second opinion, because according to the iWCLL Guidelines -

4.2. Second- and subsequent-line treatment decisions

Disease relapse alone is not a criterion to restart therapy unless the disease is symptomatic (see active disease criteria). Asympomatic increases of lymphocyte counts alone without other signs of progression are generally not an indication to restart therapy. Second and subsequent-line treatment decisions should generally follow the same indications as those used for first-line treatment

The first-line treatment considerations relevant to lymphocyte counts are seeing it double in under 6 months AFTER it has climbed over 30. Again, per the second line considerations quoted above, there need to be other signs of progression. Your specialist may have other considerations specific to you that you are not aware of, so at least explore what these are before agreeing to further treatment. Given you are in the USA, you should expect to be recommended a non-chemo treatment such as Ibrutinib.

Neil

[snowdroprose in reply to AussieNeil]

Sorry for the delay in replying. I am from the English Midlands and not USA. I guess it makes a huge difference to my treatment but you have to understand that one has to have faith in one's (NHS) Haematologist. xx

[AussieNeil Administrator in reply to snowdroprose]

While it is very important to have faith in your consultant, ultimately it is your life that is at stake. Not all consultants are equally capable and sometimes it's not their knowledge that can cause us to look for another specialist, but how we interact with them. Quite a few NHS patients on this forum have shared how they have sought a second opinion and switched to a different centre. I appreciate it can be difficult to do so, but keep in mind who benefits most!

[snowdroprose in reply to AussieNeil]

Perhaps this is the trouble - I interact very well with the 2 Haematologists I see 99% of the time xx

[Mldeterm in reply to JuciyJ]

Totally agree with AussieNeil. You should seek out a CLL Specialist if you can, your dr is clearly not up to date on CLL if that’s what he is advising. BR is a very old treatment as well, so many better ones available in the US.

[JuciyJ in reply to Mldeterm]

Ibrutinib is what he is considering next. My initial treatment was started because my platlets were a 1 for 8 weeks or so and finally started increasing after the second BR treatment. The idea is to not wait for the ALC to get too high and have to deal with low platlets again. While on W&W the ALC was 42 and then one day everything went south. I am with the VA in Minneapolis and have started reaching out for a second opinion and possible trail from the University of Minnesota.

[Big_Dee]

Hello snowdroprose

I finished B+R first line about 3 months ago. I am un-mutated so should expect 3 1/2 years of remission. If longer, great. You are now in second stage W & W.

[Smakwater]

snowdroprose,

One oncologist suggested to me that given an unmutated first line patient with minimal risk markers might expect 2 - 3 year remission with BR or 18 - 24 months with any MAB mono therapy.

This suggestion was not directed to starting treatment at diagnosis Rai stage 1 - 2, but rather at Rai 3 -4.

So, theoretically a recently diagnosed unmutated medium risk patient at Rai 0, statistically takes 48 - 60 months to reach Rai 4 TTFT. BR statistically would add 36 months.

Given that the speculation is a textbook outcome, one might expect approximately 7 years from diagnosis to relapse.

However, statistics also show everything above, below, and in between the line with respective probability.

JM

[snowdroprose]

I'd like to thank everyone who has taken the trouble to reply to what is obviously a topic to interest to everyone. Thank you for the good wishes. xx