No News is Not Always the Best News
Dr. Koffman has asked that I help him with his blog again. He has had a rough few days, and he felt it was time to give an update on his clinical trial, even though it may be short.
Dr. Koffman is now receiving his epcoritamab on an outpatient basis, which he likes as he can get his meds and then go home instead of being hospitalized for two nights as he had been when he first started. He still needed to take prednisone to mitigate any CRS (Cytokine Release Syndrome), but last week’s infusion, the second full-strength dose of 48 mg of epcoritamab for his chronic lymphocytic leukemia (CLL), was the last where the trial protocol demanded steroids.
Unfortunately, after finishing his steroids (80 mg prednisone every morning x 4) on Thursday, he faced another rebound of CRS. He has been feeling pretty down, with fevers up to 102.5 and general malaise. So, bedrest has been his solution to help his body heal. But in the meantime, his regular schedule is disrupted and has left him feeling disappointed that he just can’t shake the side effects of this med.
Have patience, Brian. The hope is that your body will get used to the meds, come out the other side feeling much better, and your CLL will be pushed into a deep remission. We are all behind you!!
Stay strong and take care of yourself!
Albie Suozzi
CLL Society
22 Responses
Thank you for the update Albie! I’ve been following and was a bit worried for Dr. Koffman when we didn’t see anything on the blog for the past few days. Here’s hoping Brian kicks this bout of CRS and gets back to a regular schedule soon. Therese
Brian, sorry you are feeling so bad. Hope it means the medicines are working and that once through this CLL will be under control. Thinking of you each day. Doug
Dr Koffman,
You are a beacon of hope and strength for us. Know that you are in my prayers and I know in my heart that you will come out the other side soon and beating the bear into submission.
Wishing you much love and strength,
Jeff Z.
Brian, regrets hearing how very difficult going this has become.
In my untrained mind, I am struggling to understand how CRS is so large a risk when your B cancer cells are so few.
Jane and I hope you get a positive sign and relief very soon.
I saw JW last week. For the first time in four years my Hgb is in normal range.
Ron
Hi Ron,
Thanks. The numbers may be relatively few, but there are still billions of cells and they are mostly accessible to the the BITE as they are in the blood and marrow, unlike the situation with other lymphomas where they are mostly in the nodes
Seems the worst is over
Stay strong, we are all in this together
Brian
Thanks, Albie.
Dr Brian,
Thank you for your updates.
You must know how many of us you keep afloat.
Our good thoughts and love are sent to you.
*Keep on keeping’ on*.
Diana
There are heroes on all sides of the fight. The researchers, HCPs, caregivers, and support community are all necessary and working together to advance the cause for treatment efficacy and, ultimately, a cure. But the greatest heroes are the patients – especially those like Dr. Koffman – who understand the great need for, as well as the risks of advancing treatment and cures through clinical trials.
To say we are all in this together speaks to the axiom that “none of us are as smart as all of us.” If it’s understood that “smart patients get smart care,” – it is also true that courageous patients get courageous care. Leaning toward the unknown, embracing uncertainties with hope and excitement for the possibilities, and recognizing that serving the greater good is always the silver lining in what can be a frightening and dark cloud surrounding us – make today’s fight tomorrow’s victory.
My voice is new to the conversation, but I have been watching and listening since my CLL diagnosis in 2019. As I am now approaching the need for treatment for my high-risk CLL – following the journey of Brian and others helps me find the courage and wisdom to advocate more effectively the best care possible while knowing that I am part of a community where care is not just what we need, but what we do.
Please keep us informed. Stay Strong. And accept the gratitude of those of us who are watching and waiting for better treatments and, one day, a cure.
Brian, I’m so sorry you are continuing to feel poorly. Praying for your body to begin adjusting to the drug and with less side effects, all the while working to put you into a looooong remission. God bless and thank you for sharing your journey with us. You’ve got many cheering and praying for you.
Thank you Albie for stepping in for Dr. Koffman in a very much appreciated effort to keep us updated on his condition/progress. Please let him know that there are many folks, like myself, who are following his trials & tribulations, holding him in our thoughts, and wishing him the best, but not posting. He must certainly know that he is loved and admired by the entire CLL community! Stay strong Dr. Koffman!
Prayers
Brian … all of your CLL / SLL friends are pulling for you. We care for you & appreciate how your journey & your blog entries have helped us in our journey. CLL Society is the #1 spot I reference when others have questions about their disease. Praying for you Brian …
Lynn B
Stay strong, Dr. Koffman! You’re in my thoughts. Thanks for being a pioneer in this trial.
Dr. K –
Your blog is already priceless for us facing similar treatments. The planet is already a better place for your presence. Please don’t feel you have to finish because of us.
Blessings on you for everything you’ve done and for what’s to come.
Brian,
The Portland Support Group sends their positive thoughts and prayers, thank you for yet again being a pioneer for all of us, you have dedicated your life to helping and we wish we could help you. Lots of love and healing, please show yourself grace and rest!
Brian, I hope that since this post from Albie a few days ago the situation has improved for you.
We will all be looking forward to the good new on the next post. You are in all of the CLL Society’s family prayers and contestant thoughts. Strength to Patty while she takes excellent care of you. Let’s go!!!
Prayers for you, Brian. You are a maverick in this in this quest towards living with CLL, not dying from it. Thank you for your courage and will.
Thank you for assisting n the update, Albie. We are all sending Brian love and support. Temporary discomforts and enforced rest for future benefits and good health! Standing with you, Brian! Virtual hugs to you and Patty and the family.
🤜💯💥❤️🩷❤️
Dearest Brian,
I think of you and Patty every single day and send you massive love. You have literally cheated death at every juncture. It is like in the nick of time a new clinical intervention appears just for you and affords you more time to create your masterpiece ….The CLL Society.
Being diagnosed at the same time and watching your journey lo these many years has been such an honor for me. What you have built from scratch is nothing short of miraculous. The support network, the research support, the website, the newsletter are all lifelines to the CLL community. Thank you.
Now, you are facing yet another hurdle in your journey. I can’t help but think you have been through so much with such grace and determination. You know you are surrounded by love on all sides and a cheering team that loves you to the stars! Keep going and know that you have a multitude of love and healing energy flowing your way every single day. xoxox
Love eternal to you and Patty, Nancy Simpson
Dear Brian,
I am Praying for the medicine to work and for you to be back on your feet soon and feeling great. Keep the faith!
Pam
brian so sorry to hear you are still struggling! you are the bravest of the brave and the cll society is without question my most important resource. god bless and refuah shelemah!
Dr. Koffman – We haven’t heard from you in a week which is worriesome. Praying for you and encouraging you to hang tough – We are all in this with you!!