FCR-neutrophils: Hi All, I've just finished... - CLL Support

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FCR-neutrophils

jackhammer profile image
16 Replies

Hi All, I've just finished 6 rounds of FCR, last infusion 2 weeks ago 13th July.I have been hospitalised twice during rounds 3 and 4 with neutropenic sepsis and then had a rest bite of a further 2 weeks before going on to round 5 for my neutrophils to come up and were at 1.1 on treatment day. My blood was taken last Friday 9 days post Rituximab and my neuts were at 0.1. Injected a course of G-CSF over Fri/Sat/Sun and blood taken again today.

Results WBC 0.7, neuts still 0.1!..Anybody kindly have any advice as to how long they will possibly flat line before coming up?

Best regards

Jack

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16 Replies
AussieNeil profile image
AussieNeilAdministrator

Jack, you haven't had an easy path, but thankfully the worst is now behind you. I do hope you get some feedback from those that have already trod your path.

I think you'll find that bone marrow recovery to produce a new crop of neutrophils could take some weeks, but the longer it takes, the more unusual your experience. Hopefully it will be any time soon, because it takes about 10 days for newly minted neutrophils to be made. Rituximab can stay in your system 6 months or more, gradually reducing as it is taken up by newly minted B-cells, so you'll need to remain vigilant against infections for around a year before you can totally relax and enjoy your new life: healthunlocked.com/cllsuppo...

Wishing you a long remission, if not a cure,

Neil

jackhammer profile image
jackhammer in reply to AussieNeil

Many thanks for your reply and wishes Neil, and yes just taking it a bit easy and being vigilant seems to be the best way forward.

All the best

Jack

wroxham-gb profile image
wroxham-gb

Good news Jack that you've completed the course.

Neil has answered your question about the neutrofils

And as someone who has also had chemo I agree with his statements. Just take your time now to recover from treatments and it does take a few weeks. From my experience it still pays to be very vigilant about things. Drinking lots of water, careful over raw foods

And mixing with lots of people. 11 months on andI still follow these simple things and it tends to keep one as

Healthy as possible.

I wish you a long and happy remission.

Best wishes.

Sue

Forgot to say, let us all know how you feel in a few weeks. We like good news!! ...

Cammie profile image
Cammie

I was in a similar position last year Jack!

I was taken off FCR after three rounds because my bone marrow was not responding took around eight weeks to get back over 1 but I was down at 0.01

The injections will help boost the count but as you know keep to the nuetropenic diet and be careful until they recover.

Wishing you well!

Geoff

jackhammer profile image
jackhammer

Many thanks Sue and Geoff. To be able to have advice from people who have been through it themselves before is invaluable!

Best wishes

Jack

thelutondodger profile image
thelutondodger

Hello Jack, I repeat the sentiments above - it's been a rocky ride for you. It takes all one's mental and physical energy plus courage and strong will. Good on you.

I had six lots of FCR - well only 5 Rs.They though my body and mind have been stuffed with enough chemicals by then! I've been in remission since October 2015. Then my lymphocytes were 0.3 (UK measures!) now they are 0.9. During the intervening months they did peak at 1.2 but they also dropped to 0.2 in January this year. It's a long way from the 380 in Jan 2015!

I've been fairly well since October 2015 although I had a fairly rough Winter with chronic fatigue and what we called general debility. Now I pace myself and do the physical and mental stuff in the first half of the day. I feel I'm getting somewhere - not sure where this adventure is taking me. So recommend you do what you can to achieve peace of mind and a time to enjoy some interesting activities - you may have to learn some different skills and strategies - but it takes the mind of this disease and that positive attitude keeps us well.

God bless,

Roger

casanova profile image
casanova

Hi Jack

Good you managed to complete your FCR treatment and I trust you gain a lasting remission.

I've had a few attempts with FCR, like you hospitalised and very low neutrophils. I had to have G-CSF injections on a number of occasions but eventually neutrophils returned to within the normal range albeit the lower end for quite a while.

Pace yourself and follow the advice of those above.

Good luck.

Maureen

jackhammer profile image
jackhammer

Thank you Roger and Maureen, you guys have certainly been through it as well!. I agree, Positive mental attitude albeit difficult at times is essential, as a friend of mine said "now its time to sit back and enjoy the show!!.. With that in mind I've booked Tenerife for mid October, hell or high water I'm going!! As has been said before, don't count the days just make each day count.!!

Best wishes,

Jack

seoul profile image
seoul

Don't worry too much , tthey will go up shortly, even when g-csf is injected. Recovery under rituximab simetimes takes time. It will go up and down for one year. But you will come to normal neutrophiles shortly.

seoul profile image
seoul in reply to seoul

I had finished my FCR 6 cycles in 4\2014 and after three month the blood was complely recovered. All counts top!!! It has never change since and MRD negativ.

Please check your blood as often as you can to be on the safe side. Not knowing about your blood makes you nervous by the time.

jackhammer profile image
jackhammer

Many thanks Seoul, these replies are certainly encouraging!..

Best wishes

Jack.

Bubnojay profile image
Bubnojay

Hi Jack

Glad to hear the treatment is at last behind you, it's a real shame that your neuts are so low and you have to be more careful than pre treatment to avoid infection. I sincerely hope that they start to recover soon so you can get on with life.

Best wishes

Bubnjay1

jackhammer profile image
jackhammer in reply to Bubnojay

Many thanks Bub, yep just chilling and taking it easy. Hoprfully catch up soon in the next meeting.

Best wishes,

Jack

Peggy4 profile image
Peggy4

Well done Jack on getting through it all. Wishing you all the best.

Peggy

prosecco1 profile image
prosecco1

Congratulations on getting through it all.

Wishing you all the very best

Elle x

jackhammer profile image
jackhammer

Many thanks Peggy and Elle, very kind of you.

Best wishes,

Jack

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