Wow! My lymphocytes got crushes: I have been on... - CLL Support

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Wow! My lymphocytes got crushes

Mining_Guy profile image
14 Replies

I have been on Acala for a month where my lymphocytes have been in the 200’s and just finished my first 100mg and 900mg of Obin back to back. Holy crap, my lymphocytes dropped from 230 to 10 in a matter of a couple days. It was rough working the dead cancer remains out of my system but back to normal after a few days. Anybody else experience this type of result? My next 1000mg dose is on Tuesday.

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Mining_Guy profile image
Mining_Guy
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14 Replies
Snakejaw profile image
Snakejaw

way to go man, crush those lymphocytes!

lindalou5 profile image
lindalou5

What is obin

patagozon profile image
patagozon in reply tolindalou5

Obinutuzumab (a.k.a. Gazyva) is a humanized anti-CD20 monoclonal antibody.

Analeese profile image
Analeese

crushing good news! Congratulations!

Fruitbat13 profile image
Fruitbat13

Yes! My lymphocytes dropped from 360 to 1.5 after my 100mg and 900mg of Obin 😃! Good luck with the rest of your treatment.

Runlong profile image
Runlong

147k to 3k in 2 days. Had a couple of rough days with the die off. It really is amazing to see.

Minefinder profile image
Minefinder

I had a bit of a rough go with the die off too. Kidney stone and mild TLS.

CoachVera55 profile image
CoachVera55

Wow, I will be following your progress since that is my next proposed treatment. Did I read it right that Acalabrutinib didn’t work for you, how long were you on it??? How soon did you start O treatment & when will you start V (O&V, right?). Also did you take Allupurinol, what dose & how long? Sorry but I trust the lived statements here more then the doctors textbook version… Thanks, Great News, you just made my day. Were you hospitalized for the infusion? How do you feel now?

Mining_Guy profile image
Mining_Guy in reply toCoachVera55

I am on A & O. Started one month before Obin infusions with Acala twice a day orally. I was told under Acala that my lymphocyte counts could go up for the first while, then Obin would crush them. My counts were stable under Alcala around 230 and were crushed to 10 by the second Obin infusion

CoachVera55 profile image
CoachVera55 in reply toMining_Guy

Oh okay. Yes WBCs & Plts elevate early & Hgb may drop some with BTKI s. Cool so with the Obin infusion were you hospitalized for the first split infusion? And did you take Allupurinol as a preventative for the potential side effects of Tumor Lysis?

Mining_Guy profile image
Mining_Guy

I was hospitalized for the first 3 as apparently any issues happen in the first 2 or 3 treatments. Next 6 are at a private infusion clinic. Got Rasburicase to treat mild TLS after the second infusion. Also got a kidney stone, but not sure how big of an impact the treatment made. My uric acid really jumped, back to normal now. Got Benadryl and steriods 1 hour prior to treatment. Allopurinol as given to me later to deal with TLS too. As a non medical professional, the 2nd treatment resulted in a lot of remnants of my cancer cells being flushed through my kidneys and playing havoc with many of my levels, like uric acid, ALT, etc etc.

Skyshark profile image
Skyshark

How much water were you drinking?

I drank 4 litres a day and all the hot chocolate I was offered, about 5 litres in all. Toilet trips were hourly and 2 hourly at night. There was also some IV of saline.

Mining_Guy profile image
Mining_Guy

i understand the water. What’s with the chocolate?

Skyshark profile image
Skyshark in reply toMining_Guy

High risk TLS inpatient. NHS supply hot drinks. I take a can of squirty cream, mini marshmallows and sprinkles.

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