Bendamustine-Rituximab - When do cytopenias disappear? During treatment? Post-treatment?

[PlanetaryKim]

Has anyone here done BR (Bendamustine-Rituximab) and actually felt great/normal afterwards? I.e., gotten their life back as a result of this treatment? No fatigue, no cytopenias remaining (anemia, neutropenia, thrombocytopenia), no chronic chest infections, no Late-Onset Neutropenia (linked to Rituximab, and possibly permanent for some)? I have been reading a lot of posts here from people who did BR. Although the treatment may be successful in terms of remission, it sounds like many people are left with a variety of post-treatment issues either caused or worsened by the drugs themselves and often feel no better than they did before treatment.

For those of you who went in to BR with severe cytopenias, at what point during treatment did they go away? Or did they not go away until post-treatment? I have tried to research this question of when the cytopenias disappear with BR treatment, but cannot find an answer.

Thanks. I have left this post set to public because public posts save more lives. I understand completely if someone does not want to comment on a public post.

[scarletnoir]

In most ways, BR worked very well for me... MRD negative based on a BMB test, and no sign of the CLL returning 5 years down the line. I feel absolutely fine at the moment, and have done MOST of the time since treatment (did a 14 mile bike ride this morning after a 3 week flu bug - didn't get any flu all winter!... I'm 68, so no spring chicken).

Downsides? Well, I did get a nasty squamous cell cancer, but I assume that was down to the CLL rather than the treatment - as far as I know, anyway. It was operated on successfully and shows no signs of returning.

I never had anaemia before treatment, but got it some 3 years afterwards... am now taking daily one ferrous sulfate tablet, and one B12 tablet (cyanocobalamin).

So, the short answer is that for some of us BR works pretty well, and I have no regrets at all about having that treatment... but we're all different, and react differently. There are also newer treatments which weren't available in the UK 5 years ago, which may be better options.

[PlanetaryKim in reply to scarletnoir]

Thanks very much for the reply, scarletnoir.

[PlanetaryKim in reply to scarletnoir]

And CONGRATS on your 5-year (and counting) remission, and on your 14-mile bike ride this morning. I would love to be able to do that.

[Jacksc06]

Hi I was recently treated with B&R. Treatment ceased around 3 months ago. Compared to pre treatment I feel very well albeit a little fatigued. I have catalogued my journey from start to end of treatment on this forum. please feel free to browse & I hope it is of help. Regards.

[PlanetaryKim in reply to Jacksc06]

I have read a number of your posts. You did a great job of documenting your journey. Thanks! So glad to hear you are now feeling well. That's encouraging. I hope the fatigue passes.

[Jacksc06 in reply to PlanetaryKim]

Thank you.

[kc1953]

I finished 6 rounds of BR IN Dec 2015 achieved a CR and after a couple of months of lingering fatigue I've felt perfectly normal since.

[PlanetaryKim in reply to kc1953]

Wow! I LOVE that story! Thanks for sharing.

[bigunwill2]

I finished 6 rounds of BR April 2016. I had 12 radiation treatments on a stubborn lymph node that started the need for treatment. I achieved remission in August. My counts were all normal in January 2017. I have had some dermatology issues with bumps in my scalp and reactions to mosquito bites, and some sink dryness. My energy is up. I'll be 70 in August. Today I spend 3 hours at the zoo with 3 year old granddaughter!

[PlanetaryKim in reply to bigunwill2]

Great news, Bigunwill! Thanks for sharing. And what a wonderful way to spend afternoon - at the zoo with granddaughter.

[greygirl in reply to bigunwill2]

curious, didn`t the chemo get rid of lymph swellings? I have one node under arm seems stubborn but never had radiation.

[greygirl]

how are you doing now? I am only getting B and the only weird thing that happened on first cycle is I vomited and the pressure on my eyeballs was enough that it looks as if I got punched in my eyes and a little shy go in public but my absolute neutrophils are a little above normal-they were zero before treatment-though doc said they tend to hide behind large lymphocyte number. So I hope to "do something" before next cycle!