Update #3 Treatment Begins

[Coolerjoe]

Well hello again all,

Wanted to start by thanking all those who have been following along on my journey.

I am doing this for my sanity and to also show people the my particular process with treatment.

If you have been following along my first treatment was let’s say an adventure.

Well i am back in the hospital for my second infusion of Obinutuzumab ( Better safe than sorry monitoring )

Looks like another striated infusion today.

12.5 ml for 1/2 hour. If tolerated up to 25 for 1/2. Slowly climbing to a max of 200 ml.

So this one should take roughly 7 hours. If all goes well. It took me most of the week to feel like myself again. I think it was the sleep deprivation. Lol. A few days of feeling foggy in the brain at first. Went back to work as i am not good at sitting around doing nothing. Great boss who knows my situation and supports me in my fight. So told to take it slow and let the troops be my hands.

If you have any questions i will most certainly try to answer them or try to find your answer.

Wow cannot believe i almost forgot the best part.

On Wed of last week my WBC was topping at 206k.

By my release on Easter Sunday morning

I was down to 106K

Had labs done on Wed afterwards in prep for today’s infusion.

9.5K i almost fell off my stool. My sis-n-law who is a doctor thought i was reading the labs wrong. I sent them too her and she was floored by the drop. She has never heard of that much from one infusion.

Still have not restarted the Imbrutinib. Will see my trial team this morning to discuss.

Getting hydrated.

Let’s slay this beast. 💉🧪🧬🦠💊 🐉

All the best

Joe

[Pacificview]

Congrats on the great results!!!!!

Thank you for sharing that...

[annmcgowan]

Great results well done.

Ann

[noeagaman]

It sounds as though things are going well. I hope that your recovery continues smoothly and you achieve a long remission.

Chris

[Panz]

Way to go, Joe!!! This is super great news and Thant’s for taking us along for the ride! 💕🙏😍☘️

[Newdawn Administrator]

Wow that is an impressive drop Joe and demonstrates real progress!

It’s a long hard road we sometimes have to travel but worth it. Great to hear your update and long may the progress continue. Make sure you get the rest you need.

Newdawn

[Peggy4]

Looking good 👍

Peggy

[CLLMoxie2]

Hi Joe. Thanks for sharing a journey that I am soon to begin. Did they tell you to avoid people, wear a mask or anything when your WBC’s really drop to minimize infection risks? I am asking because I have had a conference trip to Orlando planned for over a year ( which my fatigue may prevent anyway) - but am due to start ECOG trial about mid-May. I have not had the pre- treatment ‘come to Jesus’ talk yeh lol. I want to go on trip, but cancelling now would more likely yield some sort of refund for plane, car, hotel, Convention etc. Any advice appreciated.

All the best for continued success.

[lankisterguy Volunteer in reply to CLLMoxie2]

Hi CLLMoxie and Coolerjoe,

Your concerns about WBC might be better focused if you both watched ALC /Lymph# and ANC/Neut# as I expect that Coolerjoe's doctor is doing.

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If the ANC/Neut# stays in normal ranges then susceptibility to infections is continuing to be depressed. But if the ANC/Neut# goes below 1 and especially below 0.5 then Neutropenic diets and extreme caution to avoid crowds, other sick people is crucial.

merckmanuals.com/home/blood...

mskcc.org/experience/patien...

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If all of Coolerjoe's reduction was in ALC/Lymph# then that is extremely good.

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(BTW, I would bet that Coolerjoe is UnMutated - I could not find that detail in past postings but I experience that type of sudden drops from Rituxan and Venetoclax and IMO the sudden drops and sudden relapses happen to us UnMutated folks.)

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Len

[Coolerjoe]

My doctors tell me to be intelligent with those items as of right now. Wash hands often avoid sick people. My wife and i want to go away. I am unsure of it myself. I think we will be opting for local drivable vacation destinations for now. I gave a home made handout for coworkers to understand my issues and to ask them to tell me if they or a family member was ill. This way i could avoid the potential for catching anything.

[Smakwater]

Coolerjoe,

My numbers went to normal ranges after the second infusion. The nurse told me that Gazyva really likes CLL. Eats the bad guys like PacMan.

So what's in the Cooler Joe?

JM

[Coolerjoe in reply to Smakwater]

Hey Smakwater,

Yes exactly with that description. Normally a12 pack or so for the boat but this year may have to do the non alcoholic route till after the trial. .

[Smakwater in reply to Coolerjoe]

Good Idea, and wear your sunglasses aka Joe Cooler!

[Ohannie236]

Joe, sending all good wishes for you as you push on through treatment. I know it seems like a dark tunnel at times, but there's light up ahead. I finished FCR in the fall and am feeling good, and I'm surely hoping the same for you--and for everyone here. Hope you can feel all the love and support from this community. You sound strong, and good for you that you've kept your sense of humor. You can do this!

Lots of prayers for your recovery,

Annie

[Varney]

Congratulations on your count. I am a infusion behind you. I am in a trial at Mayo’s which I started on 4/16. I am in the 2 arm of gazyva and 420 mg of Ibrutinib. In my 11th day of taking Ibrutinib. Doing okay but experiencing very low platelet and neutrophil counts. I too, have posted my experiences after each of my infusions so I truly appreciate reading your postings. Let’s hope our postings help others who maybe starting on a trial or who are already in one or anyone else. Wishing you the very best.

Varney

[Coolerjoe in reply to Varney]

Varney,

I did the whoa is me stuff for a little while. Messed with my head. Not to say it doesn’t get in there every once in a while. My wife has become my champion. She had her head buried in the sand at first but once the numbers started rising she did a 180 and was like you can fight this. It lit a 🔥 under me. I like my beer 🍺 like anyone else but if i am not around to enjoy them? So it is time to take it back and kick its ass. Going to get myself in tip top health so that all the other things that can take me down have less of a chance.

[Varney in reply to Coolerjoe]

Love it. I love my Guinness but it is now on hold. My wife has also been a trooper. She has even given up her beer drinking. What a sacrifice! I am going to carry a mask in my Packers backpack when flying. Lived in WI for many years before moving to SC. Have been commuting from S.C. to be in this trial at Mayo’s. Drinking 2 liters of water a day to flush all bad stuff out, which the Guinness would normally take care of. Can’t wait to get on a normal routine. Some of the fatigue is leaving & appetite is coming back. Lost 25lbs. since being diagnosed in 2012. Heck of a diet. Take care

Varney

[josephinef]

That’s great news Joe. Hopefully you’ll continue getting good news with your journey. Good luck with everything.

Take care.

Kind regards Josephine 😊🙏👍