One of my doodles years ago.
“We must accept finite disappointment but never lose infinite hope.” – Martin Luther King, Jr.
I won’t lie to you…this is the kind of post I hate doing. In addition to our disappointment, I feel the frustration of all who care about us and are traveling this journey alongside us.
Dave went out of remission almost a year after receiving his Car-T therapy. We are understandably disappointed and sad, even a little angry (well, I was!). I was hoping to get at least another year for him, if not longer. We both find ourselves reliving our fabulous year of being off treatment, not being tethered to an infusion center every week, daily meds, etc. We’ve enjoyed so many things this year with our friends and family. So, for now, it is what we are holding on to lift us out of despair.
The GOOD NEWS is that FDA just provisionally approved an off-the-shelf biospecific therapy similar to the Car-T. The timing is pretty amazing. Here is the press release from Johnson & Johnson. The trial is ongoing, but the positive results were enough to get provisional approval now, with permanent approval to occur once the trial results are confirmed.
As we understand it now, we will return to Little Rock in 4-6 weeks (the pharma is just now working to ramp up production and delivery) to begin a 9-day in-patient of therapy. It’s done with a dosing every 48 hrs alongside monitoring for neurological toxicity and will continue like that every two days for nine days. Then it goes to weekly as an outpatient. If all goes well, we will head home and continue in Sacramento. Hopefully, they will be able to get this therapy at home. Some of those minor details we still have to get sorted and understood.
So another holiday in Little Rock!
Hi Lori:
I hope you and Dave are doing well.
How is the journey going with the Teclistamab?
My husband and I met you in Infusion B in December 2022.
My husband was recovering from Car-T. We were told in March that Teclistamab is the next treatment on the agenda when Car-T fails.
Hoping for some insight into how long you stayed in Little Rock and how Dave recovered after the treatments.
Thanks
Hi Lori:
I hope you and Dave are doing well.
How is the journey going with the Teclistamab?
My husband and I met you in Infusion B in December 2022.
My husband was recovering from Car-T. We were told in March that Teclistamab is the next treatment on the agenda when Car-T fails.
Hoping for some insight into how long you stayed in Little Rock and how Dave recovered after the treatments.
Thanks
Dear Lori and Dave – The two of you have created a big wall holding back the tide of MM… and I’m holding you both in prayer and healing energy for this next segment, intending it brings the desired results!
Thank you Annie. Quite a ride!
Thank you Kathy! I’m right there with you. Over these days still here, I’m leaving today for Kentucky and Dave Florida, I’ve become more hopeful about what he’ll be getting. Poor Dave has been sick here with RSV! So he’s just feeling crappy. But we are planning our return and many here are just as devastated but pulling for us!
I’ve been thinking about the two of you and I was hoping for good news. This last year has been pretty amazing and with the new therapy I’m hoping for more amazing years. Savanah needs Dave to pull her down the hall on her blanket. Thinking of you with positive vibes this cold, rainy night in Oregon. Having a hard time sending this.
I’ve been thinking about the two of you and I was hoping for good news. This last year has been pretty amazing and with the new therapy I’m hoping for more amazing years. Savanah needs Dave to pull her down the hall on her blanket. Thinking of you with positive vibes this cold, rainy night in Oregon.
Sorry to hear – MM is just so relentless sometimes. Was really hoping (I admit somewhat selfishly, as I watch from the sidelines knowing that Car-T will probably be in Jeff’s near future) that Dave would have had more than a year off treatment but then I think,” Well a year is better than less than a year or the alternative of if it hadn’t worked at all….”.
Have also heard good things about teclistamab so hope it works and knocks his MM back down again quickly with minimal side effects.
We learn from each other, watching from the sidelines, and we really had a great year. I wished for another. I’m hopeful. That the T cells exhaust themselves with the Car T, and this therapy would be regularly replenishing them, seems like it would be full of possibilities.
Not at all what I expected to read. I am so sorry, but like you, I count your year off treatment, and what you were able to do, a huge blessing! Praying the new treatment proves to be very effective, without negative side effects. Cheering you both on, and lifting you up in prayer!
Not at all what I expected to read. I am so sorry, but like you, I count your year off treatment a huge blessing! Praying the new treatment proves to be very effective, without negative side effects. Cheering you both on, and lifting you up in prayer!
Thank you Linda. I know you understand the ups and downs of it and yes this year has been so wonderful!
Lori & Dave,
I am so sorry it did not last longer- the unpredicatableness of mm☹️ I have heard great things from med community about teclistamab & hope it goes great with a long remission. There is someone who had been on our support group who could not do car-t & she starts tec on Monday. Family & friends will be cheering you on !
Carol
Thank you, Carol. And that’s good news to hear.
Dear Lori and David,
Sending you all blessings and encouragement for a totally successful new treatment regimen. I understand how disappointing it is that you have to now go through yet another treatment. But I know you both and what you can step up to and so know that all of us who love and care for you are right there with you.
Love and hugs,
Lynne
Thank you Lynne!