“I have got to admit it’s getting better.” Lennon/McCartney
My dose of 100 mg of prednisone, a potent steroid, will calm a world of inflammation. And I was undoubtedly inflamed, but not for long, and I feel much better now. The odds are in my favor that the worst is behind me. The cytokine release syndrome, or CRS or less politely called cytokine storm, that had me shaking two nights ago with fever and a racing heart was technically only Stage 1 CRS, as mild as it gets. There was no drop in blood pressure or need for supplementation or other support to move it to a higher stage. Stage 1 or 2 CRS is typical for bispecific antibodies such as epcoritamab, where CRS tends to be milder than that seen with CAR-T.
The steroid to prevent and calm CRS still makes sleep a challenge, but with no hiccups and no pain to keep me awake, when I did sleep, it was sound.
While my need to be inpatient for future dosing is over, the protocol seems to demand a 5th week of steroids taken outpatient for the 2nd full dose of 48 mg. to knock back my chronic lymphocytic leukemia (CLL). Around 16% of lymphoma patients can get CRS recurrently, and it’s usually after this next dose, but I am betting I won’t be that unlucky 1 in 7. ICANS or neurotoxicity also can occur later, but it is even rarer. I will be alert and prepared for both, but I think I have endured the worst of any chomping that this BITE (bispecific T-cell Engager) is aiming at me.
I have been forcing myself to walk daily even when I am in no mood. Also, doing weight training, but not enough high-intensity interval training. It’s important and boosts immunity.
Saving the best news for last: It looks like it might already be working. Dr. Danilov isn’t committing, but he thinks one of my only two palpably enlarged nodes, the one in my right axilla (armpit), is softer and smaller. I agree. YAHOO! It’s working its magic within a day after a single therapeutic dose. My lymphocyte count has fallen, too, but the high prednisone dose can cause a transient dip of no clinical significance. So, I’ll need to see if it continues to trend down before celebrating that as a definite win. Yet there is still good reason to believe that my CLL is being nibbled away by my immune system with a helpful push from an engineered monoclonal antibody. My restaging MRI in October will reveal a more detailed story after five full doses. That result will be significant.
This is all I could ask for at this point. The nasty but tolerable 100% anticipated CRS is probably in the rearview mirror and hints at some early efficacy.
There are more trial labs tomorrow, but nothing I’ll see to report. My poor veins are taking a beating. The next subcutaneous injection is on Tuesday, so there will be fewer blog posts in the future. And that is a good thing.
Stay strong. We are all in this together.
Brian Koffman
15 Responses
We are standing with you, Brian and celebrate this progress! Onward! 🤗
Great news, Brian! We’ll look forward to more — especially in October.
I’ve been waiting to comment until it appeared you might be ‘over the hump’, and this latest post makes me believe, my friend, that this day has happened. I wish you continued progress with no more hiccups(pun intended)
Holding you in our thoughts
Daryl
Dear Dr. Koffman,
Great to hear that you’re doing so well! Thanks very much for spreading your news. As usual, you are a trail blazer for the rest of us.
Be Well,
John
Good news Brian.
Jane and I read your updates with great interest both for you personally and for the potential implications to us all.
Brian, I’m glad things are going well and that you’re past the hardest part of this regimen. I’m thinking of you and hoping this treatment does wonders for you.
Great to see this post Brian and that things are getting better on all accounts, including those hiccups. Thank you for explaining each step of the way as you help us all by participating in this trial.
I was surprised to read that you are still weight training through this all? Do you pack your weights for your inpatient stays? and do hiccups count as resistance training (sorry, couldn’t resist)?
LET’S GO!!
I am loving the progress Brian and eagerly await the next update!
You will be in all of our thoughts during the Tuesday OC meeting and you will be missed 🙂
Terrific updates! Thank you for the clarification of concerns, issues and remedies.
We are so appreciative of your willingness to share your challenges and insight. You continue to make us part of the progress of the extraordinary times we live.
Many thanks!
Thank you so much for sharing your experiences in such detail. It gives me a better picture if what it may take to beat CLL back. As you help yourself, you’re helping all of us. This is love in action.
Brian,
its a blessing to have you and your ability to both endure treatment and yet at the same time, share the roadmap and the details is a true gift. We are in this with you.
Bill
We are so happy that you are doing well. Stay strong!
Brian,
I look forward to having a robust, free-wheeling conversation with you in the near future. Your sharing of this journey is richly informative, and greatly appreciated. It keeps us connected, rather than wondering. Thank you for your generous spirit.
Cheers, and Onward! Bob
Brian,you remain in in my thoughts most every day and I am encouraged to hear this latest news. Your courage is willingness to share this journey is just amazing. We all hope the worst is in your rearview mirror and that better days are ahead.