Started B&R Treatment last week.

[kgerlach57]

Hello. As so many do on this site, I thought I would provide info in the hope of helping others. Brief health history: diagnosed with CLL 2012, no symptoms, just elevated WBC's. On W&W all this time. Fast forward to spring 2020. Became extremely short of breath and found to be in heart failure but exact cause was unknown. After multiple diagnostics, CLL has turned into SLL which is also non-Hogkins B Cell lymphoma, in my heart (very rare) neck/C-spine and other areas. In June 2020 I underwent placement of a pacemaker/defibrillator for 3rd degree heart block/heart failure.

Treatment: started 9/23/20 on Bendamustine only. (next treatment will consist of both B & R later this month) Plan is for B&R for 4 months with f/u PET and other tests to determine response.

In just one treatment of the Bendamustine, my WBC's went from 134,000 (I have been as high as 200K) to 19,500!!! Wow.

Today, I just returned from getting a steroid injection for hives. I was surprised I was getting them an entire week after last treatment but I guess it can happen.

I tried really hard to keep this streamlined. From now on, I will just post a brief update without all the background info. FYI, I am 63 years old.

God bless you all struggling along with this disease. If anyone wants to ask me more questions, please feel free and I'll do my best to answer.

[Shedman]

I finished BR summer 2019 and, with very gradual resolution of chemo brain, today I feel so much better. My treatment became urgent with kidney complications - the problems that can crop up.. You sound properly philosophical about your situation (hopefully CLL treatment sees your heart improve too) — let’s face it, we don’t have much choice but to accept things and take the best treatment our medical teams can proffer.

— probably I was less philosophical at the same stage; it is strange how resentful one can feel prior to each further round of treatment, when the effects of the previous round are nicely wearing off in the 14 days prior!

Rituximab - hopefully you have no adverse reaction, but I was glad of the pre-meds of antihistamine, steroids and the anti nausea/sickness pills — all the same, my minor reaction benefitted from slow infusion.. It was only slightly disconcerting that the nurses had the Adrenalin kit ready in case of a drastic initial anaphylactic reaction; I owe them so much for all their hard work, consummate care and kind reassurances.

Treatment affects everyone slightly differently - I hope you have a smooth journey, but do start being very hygiene conscious / diet careful.. eg. eating only cooked food that avoids possible contamination, since the immune system tends to dip. My wobble came just before 2nd or 3rd treatment - a few nights in hospital, neutropenic with fever, on antibiotic drip, next BR treatment delayed a few days.

[kgerlach57 in reply to Shedman]

Thank you for sharing. I will be getting the "slow drip" next time of R. Wish I had more treatments behind me that in front, but only way to get there is to go forward. I pray you have MANY MANY years of remission. Take care...