Morning After First BR

[Estate1]

-Restful 6 hour sleep (no meds to sleep required).

-BP and temp normal

-no nausea or vomiting no meds required

-hungry as a bear

One more session of B later today and that’s it for a month. Weekly blood tests now. Another CT scan in the future but not sure if that’s soon or after another month or two. So far so good! Feeling fortunate with lack of chemo symptoms

and living where I do. (Alberta Canada).

Onward and Upwards!

[Jacksc06]

Hi. Glad to hear things are going ok. I had 4 cycles of B & R a couple of years back. Best wishes.

[Estate1 in reply to Jacksc06]

Thank you! I am scheduled in for 6 sessions but I’m hoping that I won’t need that many.

I scene a few folks here say they didn’t need all the treatments in the end.

[Jacksc06 in reply to Estate1]

Indeed after four cycles the team were happy with my blood count so ceased treatment. I have catalogued my journey on this site warts & all good times & bad. Feel free to browse, Hope it helps.

[Estate1 in reply to Jacksc06]

Thanks. I will! God Bless

[attarintiki in reply to Jacksc06]

Hello jacksco06

Curious to know at what levels of ALC your team decided to cease the BR cycles?

[Jacksc06 in reply to attarintiki]

Hi not really up to speed with all the numbers. Had the cycles Haemotologist ceased treatment. Then spent seven weeks in hospital with numerous ailments. The details are on this site on my blog.

[GMa27 in reply to Estate1]

After which cycle are you being retested? 🙏

[Estate1 in reply to GMa27]

I have blood test once a week after chemo week prior to cycle 2, I know there’s another CT scan planned and I thought I heard that it would be before cycle 2. Just not sure on that. I have Hem/Onc appt prior to cycle 2 so I’ll ask then.

[Benlewis in reply to Estate1]

Sorry if you have mentioned this already but do you know your FISH results and was IGHV tested?

[Estate1 in reply to Benlewis]

I had a Fish test and I asked Dr about results and she said all they look for is positive or negative for P53 I think was the factor. I was negative. She said that was good.

[Estate1 in reply to Estate1]

Note: The FISH was done about a month before first BR.

[GMa27 in reply to Estate1]

Those are routine blood tests for chemo. I am talking about FISH/Flow etc. I would think it would be after 3rd cycle unless blood work is drastically improved and nodes completely gone. Mine was 5 weeks after 3 rd cycle. My oncologist wanted the 3rd round of chemo to have time to do it's job. 🙏💕

[Estate1 in reply to GMa27]

I will be asking these questions for sure. Learning the ropes. Haha. Thanks.

[GMa27 in reply to Estate1]

Good for you! 💪

We are all still learning! No matter how long our journeys have been.

[Big_Dee in reply to Estate1]

Hi Estate1

I just completed my third cycle of B+R as you know. I am 13q deleted and un-mutated. Doctor have done three FISH tests on me over the course of my CLL progression. Last test was right before I started B+R to make sure I was not 17p, which would mean that I should not have B+R. I am now doing blood work up every week as well to determine if I will need to finish cycles 4, 5 and 6 of B+R. My blood work up is great, but it becomes a fine line between making sure the B+R has knocked the CLL down enough without dropping hemoglobin, neutrophils and platelets to much. God bless you.

[Estate1 in reply to Big_Dee]

Thanks for that info Dee. My Hem/Onc is keeping the Science simple for me. The P53 neg was good news re: my prognosis. (Newbie talk here haha). Having had a second opinion from the Cross Cancer Center in Edmonton AB (affiliated with my local Central AlbertaCancer Center where my Dr works) was reassuring on the lymph biopsy that was done. Having had my first chemo sessions this week all is getting VERY real. I appreciate the kind folks on this Forum and I’m gaining confidence through education. The long and winding road that is CLL. Blessings!

[attarintiki in reply to Big_Dee]

After 1st cycle my ALC fall from 192 to 4.2. I am afraid if I take 2 cycle ALC levels may further dropdown ? Your experience ?

[Big_Dee in reply to attarintiki]

Yes, I followed about the same pattern. Dropped from 197 to 6.2 in 26 days after first cycle of B+R. Second cycle up to 13+, then down to 6.2 third cycle. What you want to watch is your hemoglobin, neutrophils and platelets. My hemoglobin was down to 9.0 after first cycle, if it had dropped to 7.0 I would have to have transfusions. I was given Neulasta to boost my white cells up. I am now having weekly CBC panel blood test to monitor my hemoglobin, neutrophils and platelets levels. I saw doctor today and it looks like I will have 4th cycle of B+R next week because I am responding well to treatment and what few side effects I had have now subsided.

[attarintiki in reply to Jacksc06]

Hi Jacksc06

You mean that you finished with 4 cycles of BR ? How many yrs of remission ?