BR Expectations?

[Jjcrepeau]

Hello! My CLL has finally progressed to the point where my doctor now wants to start BR for treatment. I've become extremely anemic and have needed transfusions about once a month for the past 5 months. More recently, I have become neutropenic and my doctor has started me on Cipro as a prophylactic. I was wondering if those of you who have had this treatment could share what it was like for you? I'm sure my doctor will go over some of this information, but it's nice to hear first hand from others who have actually gone through it. Thanks so much!

[AussieNeil Administrator]

While you are waiting for those who have had BR treatment to reply, check these past posts: healthunlocked.com/search/b...

You haven't shared how neutropenic you are now, but given neutropenia is a common side effect of BR treatment, now is the time to learn about neutropenic diet precautions: healthunlocked.com/cllsuppo...

Of greatest concern to me is that your doctor has started you on Ciprofloxacin as a prophylactic, so presumably you will be on this fluoroquinolone class antibiotic for the next 6 months. Given the recognised risk of serious adverse events with fluoroquinolones, including rupturing tendons, I recommend you ask your doctor if another antibiotic would be satisfactory. The FDA has required a lack box label for these antibiotics: ncbi.nlm.nih.gov/pmc/articl...

Our member sparkler 's personal experience of this serious side effect has resulted in her advocacy efforts to ensure these drugs are used responsibly.

Neil

[MsLockYourPosts Passed Volunteer in reply to AussieNeil]

"Black Box" warning. I know of several people who have suffered tendon damage because of Cipro. The first was an MD, who, before the warnings were ramped up, ended with a ruptured Achilles' tendon. My brother has permanent tendon damage because of Cipro.

This class of drug should only be used as a drug of last resort. I have added all drugs in this class of drugs to my list of drug allergies, and in spite of that have had to refuse to take Levequin on one occasion, and Cipro on another. Scary that these are being handed out like candy, and that doctors don't check drug allergies before calling in a prescription.

[Jjcrepeau in reply to AussieNeil]

Thank you very much. I will be seeing my doctor in a couple of days and will discuss this with her

[zaax]

Just out of interest why doesn't your doctor recomend one of the new drugs?

[Jjcrepeau in reply to zaax]

We did discuss the difference between the FCR and the BR, and decided that the BR might be a better fit. The only newer drug discussed was using the Ibrutinib, but as I am still considered "young" (I'm 51), we were concerned about the cost of the drug over the remainder of my lifespan. Is there something else that maybe I am not aware of?

[AussieNeil Administrator in reply to Jjcrepeau]

FCR has been shown to give longer remissions than BR, with BR seen as a gentler treatment, so preferred for those over 65. That assumes you don't have 17p/TP53 deletions, in which case Ibrutinib is preferred. There may be other options available to you via clinical trials, but it seems you don't have much time before you need to start some treatment.

I agree with other respondents that you should consider seeking a second opinion from a CLL Specialist.

Neil

[virdieblue in reply to Jjcrepeau]

We are all expecting to get off Ibrutinib someday - there are many new drugs in the works that may allow that. I wouldn't use constant Ibrutinib use as a determining factor in choosing treatment. Note - Cipro is contraindicated with Ibrutinib.

Virginia

[CLLCalifornia-USA]

I didn’t have a good outcome with BR, however we’re all different. I was told it was easier than some of the other chemo, but for me it wasn’t. I have been on Ibrutinib since January 2017 with no negative results. Just one pill daily at the same time each day has given me amazing results. Recently had my labs done and all in normal range. Has your specialist discussed other treatments? Why did he opt for BR? It might be a good treatment for you, but I would ask why. Personally, I believe in second opinions when it comes to my life. Have you seen a CLL specialist? Wishing you nothing but the best as you move forward with your decisions. Sally

[Jjcrepeau in reply to CLLCalifornia-USA]

Thank you

[twopars]

Hi, I completed BR one month ago and am now in remission and feel better than I have in years. All labs are within normal range now. I had only one side affect of the treatment and that was veinous damage of my arm veins as I opted not to have a port inserted. It has started to subside and the veins have started to be accessible for blood draws. It takes 6 months to do the regimen but ultimately for me it was a good decision. When I ultimately relapse down the line I hope that some of the oral options will be my next choice. Good luck!

[Jjcrepeau in reply to twopars]

Thank you!

[Ellieoak]

Dear jjcrepeau, I went on BR years ago. I turned out to be allergic to Rituxian so I finished out with Bendamustine. It only gave me 2 yrs remission. Since then I’ve been on Imbruvica for the last 5 yrs. I am also on Bactrim prophylaxtic. If your Dr. Isn’t a CLL doctor go to someone else. I would not do a chemo since there are other drugs that can do a much better job with less risks.

[Jjcrepeau in reply to Ellieoak]

Thank you!

[sparkler]

Hi Jjcrepeau

I'm sorry for such a late response; I'm not receiving notifications when someone tags me.

I'm assuming that you've heeded the good advice given here already and have now switched to a safer class of antibiotic. The use of Cipro or other Fluoroquinolones in this situation is totally inappropriate and could cause you massive health problems, both immediately and down the line; the action of Quinolones doesn't stop but continues cascading systemically and the damage to Mitochondria, DNA replication and small fibres generally cannot be understood estimated.

Please do not take a Quinolone/Fluoriquinolone antibiotic unless everything else has failed and you're in a life or death situation.

I'm in London at the moment for the EMA's (European Medicines Agency) 2nd only Public Hearing. Due to high public demand this is for gathering more info about the safety and risks of Quinolones and Fluoroquinolones, as part of their PRAC review about the dangerous and inappropriate use of this class of antibiotics.

I wish you all the best for your treatment and hope the regime doesn't include Cipro or Levofloxacin or indeed any other Quin/FQ.

Be well

sparkler x