Today was my first appointment since ending my V+O treatment. All of my numbers except for lymphocytes are in the normal range.
WBC - 4.8
HGB -15.9
PLT - 162
TLC - .99
ANC - 3.04
Disease status says: No evidence of disease in the doctors notes. It doesn't appear that there will be any MRD testing done. While I would like to know, it really isn't that big of a deal for me. Next appointment in three months.
Excellent!
Congrads on your results!
Congratulations well done
it takes up to 1 1/2 years for the lymphocite count to recover I had the same treatment and at the checkup in March my absolute lymphocites recovered and they did a next generation sequencing test which tests in 1 Mio cells and no cancercells are detectable. I’m off all meds since March 22
is that 1 1/2 years after the start of treatment or 1 1/2 years after completion of treatment?
Completion of treatment
Thank you.
Congratulations.
Similar to mickimauser11. Completed V+O about 1.5 years ago. Took a while for my absolute lymphocyte numbers to climb up into the normal range, but in my January and April tests they have settled in nicely and are stable. Oncologist even pushed my next appointment to 4 month interval!
Hoping I get a long remission from the treatment.
Congrats! Thank you for sharing your lab numbers throughout your treatment in your bio. It really helped to see how they evolved. Seeing your absolute neutrophil count dip and then rebound with the Neupogen injection (to treat neutropenia) was pretty amazing.
You're welcome. I didn't really update my numbers after the infusions because they didn't really change that much. I am hoping I can take a long break from treatment and enjoy life without taking a lot of pills everyday.
May you enjoy a lengthy remission!
thats wonderful news .. how long were on the O&V treatment ???
With the few issues I had with neutropenia, it ended up being 1 year for the treatment.
👍
did you just need a shot for the neutropenia ? and did you keep taking the V. during that time ?
I ended up having 3 shots over 3 days for the neutropenia and they stopped my Venetoclax for a week. They started me back on Venetoclax at 300mg for a month and then back to 400mg.
Hi Dexterdoggg thanks 4 that info .it will be helpful knowing the potential issues i might have ...how about your platelets did you have any issue with that .??
My platelets went into the low range for my last 3 months of treatment, but nothing that really needed me to change treatment. The last three readings were 126, 130 and 128 on a scale of 150-400.
thats very good .. thanks for keeping us informed . my platelets are 48 at the moment with 400 mg. of V for the past 2 months . i am taking papaya leaf extract that seems to be reducing the bleeding symptoms that i had when taking calquence ... hoping to have results like yours when i finish the V. may you continue to be MRD . 😊 blessings , james
Your numbers are as expected and look good. What enquireing minds want to know is, how are you feeling? How is life now that your CLL has been taken to the wood shed?
I am feeling good. I have put on some weight that I am not happy about, but I lost about 90lbs at one point before treatment so I can't really complain too much. I never really felt bad before treatment other than the increased spleen and liver that made eating an issue at times. That went away quickly with treatment and that isn't an issue now. The one thing now is wondering when the pfs will end and when the next treatment starts. I explained it this way to a friend of mine. It is like I am sitting on a bomb and when it goes off, it is time for treatment. During treatment, you are off the bomb, but once treatment ends, they put you on another bomb waiting for that one to go off. Right now it is just wondering when the new bomb is going to go off.
You were successfully treated. Most people in treatment naive group go for years without any need for a retreat.
I would not put any energy into worrying about the Bomb. Enjoy your time off treatment and if you develop any symptoms years down the road. There are plenty of additional treatment options if needed.
So as the saying goes.."don't worry, be happy".
And from me, this is your off time. Ignore thoughts of your off time running out. Let your Doctors worry about that. Its what they get paid for.
When I am on vacation, I enjoy that vacation all the way to the last minute. Enjoy your vacation!!!!!!!!😁
Thank you. I don't really think about the CLL at all most of the time. The only time I think about it is when people ask about it or I am reading about the new treatments coming out. It doesn't bother me like it did when I was first diagnosed. My plan is to do this treatment again in the future after years of remission. I want to keep as many treatments available for the future and deal with it when the time comes.
If my memory serves me correctly. Follow up on CLL14 five years later. There is still 60% PFS and most people that have progressed have not needed treatment.Took me 5 years to need treatment as I had an indolent course. So quite possible for us with a indolent course. It might be 5 to 10 years before a retreat.
I found out about my CLL during a doctors appointment, my first in about 15 years. My WBC was already at 34,000 so I don't know what is normal for me or how quickly it went to 34,000. I know that a little over 2 years later I started treatment with a WBC of 398,000. My other numbers didn't call for treatment but my spleen and liver enlargement made eating difficult at times. I am hoping to get 5 years before another treatment but I don't know. They couldn't determine my mutation status which makes it harder to determine when I might need treatment again.
Working while on treatment O&V
Starting V&O treatment 
O & V Treatment - ALC Doubling 
O+V treatment in Canada after Calquence
