SUGGESTIONS?: I started treatment (B+R) at the... - CLL Support

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SUGGESTIONS?

laldoroty profile image
6 Replies

I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except my WB was 2.1 and my Lymphs was 0.2. He told me to come back in 2 months (next Wednesday) for another blood test. He also told me that in Ontario Canada our health plan would only pay for the drugs if started within 6 months after the last chemo treatment which is Dec. 24. I am worried my CBC will not be good enough. Does anyone have any suggestions.

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laldoroty
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6 Replies
GMa27 profile image
GMa27

I am not sure why you need the Rituxin maintenance. It looks like your in remission. Did he suggest a Neulasta shot? You still have plenty of time to start Rituxin if you have till end of Dec. If ur blood work is still the same, have him test u again the beginning of Dec. After FCR my WBC remained 2.5 for a year. I think you may be in good shape if everything else is good. 🙏💕

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply to GMa27

Are your neutrophils in range (absolute, not percent)? If so neupogen would not be indicated. As GMa said, Rituxan maintenance is not "the norm" for CLL patients treated with BR. It is used more often for Follicular Lymphoma patients.

My last treatment was Gazyva and, as was the case with GMa, my Lymphocytes took a hit. When I asked about them not coming back up my doctor's response was, "What did you expect? You were taking a drug designed to reduce your Lymphocytes." If she wasn't worried, I wasn't going to waste my energy worrying. Mine were below "in range" for about a year, but sit right where they should be now.

Eric70 profile image
Eric70

I can only speak for my own experience here in the UK. I had 6 months of R&B treatment 3 years ago and although I had problems with the treatment my CLL has remained stable ever since and no one mentioned maintenance every 2 or 3 months. I spoke to my specialist only a few months back and he told me I was still in total remission.

Clovelly profile image
Clovelly in reply to Eric70

I can echo Eric's point. I finished my BR in Feb 2017 in UK and my bloods are all still fine. No mention of any maintenance regime.

attarintiki profile image
attarintiki

I had only 2 cycles of BR, out of planned 6 cycles and the rest were discontinued due to severe side effects. After my last (second) infusion in Feb 2019, my Neutrophils went down very low. Immediately inj. Nupogen was given to boost up the Neutrophils levels to normal. The Good news is that since then, I am under remission (for only 2 cycles) My Oncologist mentioned, no need of any treatment for the time being and only follow ups with Blood tests. Happy to know that you are under remission and why you need further R follow-up. Please take a second opinion from another CLL expert near to your place. Pray for your continued remission from CLL. Enjoy your life.

MorganNL profile image
MorganNL

I also underwent 6 months of B+R in 2018, in remission since....but there was no mention of needing Rituximab as maintenance. I live in NL, Canada. I might ask your doctor why he suggests maintenance? And Gma27’s suggestion to have your bw repeated in early Dec might be a good idea. Good Luck

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