Update #4 “ Treatment Begins. “: Hello All... - CLL Support

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Update #4 “ Treatment Begins. “

Coolerjoe profile image
14 Replies

Hello All

Sorry a few days late. I had my 3rd infusion on Friday. Got to Rutgers around 7:00 A.M.

Labs, first the wait for results. No issues so let’s get going. Started infusion premeds 💉around 10:00 am. Started 🧪infusion around 11:00 am. Striated step up again. Took it much faster this time was done by 3:30PM.

So it looks like outpatient infusions from now on. Having a little problem with a tooth this week getting that looked at on Friday. Mouth is sore

Do not want an infection. 😳🦠

Next treatment is on the 14th of June.

So far i feel good a bit more energy than in the last few weeks. I am sure that was from the hospital stays.

Not much more to report at the moment.

Everyone have a great week.

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Coolerjoe profile image
Coolerjoe
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14 Replies
Coolerjoe profile image
Coolerjoe

Sorry next treatment is May 14th.

look again. those are containers of sterile wipes. You buy similiar containers in supermarket.

ygtgo profile image
ygtgo

... ' No issues ' ....' Not much more to report at the moment. '

No news is good news ...

I hope that there is no news on the infection front.

ygtgo

cajunjeff profile image
cajunjeff

I got the reference Scott. :)

Coolerjoe profile image
Coolerjoe

Lol great call.

mrsjsmith profile image
mrsjsmith

Scott,

I thought of you reading the London Metro newspaper today ! Picture from Game of Thrones with a Starbucks cup in full view ! Ooops 🤭

Colette x

alpek profile image
alpek

Glad to hear things are going well. How are your blood numbers after several weeks on Ibrutinib/3 infusions?

Coolerjoe profile image
Coolerjoe in reply toalpek

I am going to scan and upload my labs so people can see the progress. Later today when i get home.

Brandy16 profile image
Brandy16

Following your journey closely. My husband started a trial today for Ibrutinib/Obenituzimab. Reacted first thing to the Obenituzimab with convulsions. More benedryl and some demerol. Hoping for the best and minimal reactions. Glad you are doing better and seem to be through the reactions.

Coolerjoe profile image
Coolerjoe in reply toBrandy16

Finished up my Obinutuzumab infusions a month ago. Now just another year of Imbrutinib and Venetoclax and hopefully will be in remission.

Brandy16 profile image
Brandy16 in reply toCoolerjoe

Best of luck. Our Arm of the trial does not include Venetoclax. We were hoping for that but we will see where this journey takes us. I hope your remission is soon!

Justasheet1 profile image
Justasheet1

Brandy,

Same thing happened to me. After infusion number one, it was eventless.

Jeff

Brandy16 profile image
Brandy16 in reply toJustasheet1

Thanks for sharing. We weren’t really expecting that so it took us off guard. More Benedryl and some Demerol and he was able to finish. Hoping for a better Day 2 infusion.

Justasheet1 profile image
Justasheet1 in reply toBrandy16

Brandy,

Here’s my experience with Gazvya. I posted it previously.

Jeff

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