Nov 11th, 2022 by Lori Puente
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!
Posted in Abecma Car T, Caregiver Thoughts, Johnson & Johnson, Misc, Multiple Myeloma, Tecvayli (teclistamab-cqvy) | 16 Comments »
Aug 3rd, 2022 by Lori Puente
“Stronger together facing illness”
This group is worldwide and making inroads in the USA. I agreed to do an interview with them.
I have found that there are many online resources and places for us to connect. They offer different things for different folks. Don’t be afraid to explore.
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Feb 22nd, 2022 by Lori Puente
“Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill
Wow, what a wild ride we keep having. Good stuff, challenging stuff, crazy stuff, and ARE YOU KIDDING ME STUFF!
Every once in a while, I say, “Can we just go back to Little Rock?”
Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Goodness Village, Little Rock, multiple myeloma, UAMS MIRT
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Nov 27th, 2021 by Lori Puente
“The purpose of life is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” — Ralph Waldo Emerson
It’s hard to believe that we are winding down our journey here in Little Rock at UAMS, Myeloma Institute! From all appearances in our early testing, Dave’s Myeloma is in full retreat! When we come back for testing and follow-up in early February, we should have more definitive news. It’s all very exciting! Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, MclartyVW, multiple myeloma, S. Lake Tahoe, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 26th, 2021 by Lori Puente
“Be thankful for everything that happens in your life; it’s all an experience.” – Roy T. Bennett
What a lovely and yet another unexpected gift as we are here for such a long Arkansas stay!
We had a Thanksgiving invite to Memphis with friends of my family I hadn’t seen in over three decades. But Dave wasn’t feeling comfortable going. The long drive (2+ hours) and a crowd. My family friend and I were disappointed, but Dave’s comfort level with his health was in the driver’s seat. We got another unexpected invite from a stranger. He and his wife read the article in the Arkansas Gazette. He’s an MM survivor of 11 years and travels about 30 min to UAMS for his care. His wife said, “Gosh, I bet they would love to have Thanksgiving in a home.” With that said, he took it upon himself to contact the clinic and ask them to pass his name and number along to us. They got my permission to send it. I didn’t know who it was or what it was about. But when I mentioned it to our APN, she said, “What’s his name?” I told her, and she said, “OH! YES! He’s a doctor and a patient here. He was in the Air Force as I remember.” Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, Mulitple Myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 24th, 2021 by Lori Puente
“There is always, always, always something to be thankful for.”- Anonymous
We had a very long day today. Starting very early in the morning. A bone marrow biopsy and then off to get a PET Scan. Neither thing allowed Dave to eat past midnight last night, so I came home and made him a sandwich and packed some yogurt and such so that when he was done, he would have something to eat.
We got stuck in the PET for hours. Which I have to tell you is unusual. I don’t know why it took so long, but our doctor’s office called and begged off on us stopping by for a check-in. I took it. We were exhausted. We headed up to Infusion B hoping to get a growth factor shot to help boost Dave’s WBC. While we were there, our APN had pulled up the PET Scan. We had the scan, minus the radiologist reading and assessment. But we could all see comparing it to his previous scan that significant improvements were presenting. It was exciting. And then a text came in from a nurse in the institute that Dr. van Rhee also felt the scan showed “significant” improvement. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, multiple myeloma, Thanksgiving, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Nov 20th, 2021 by Lori Puente
Photo by @veradavidovaphotography Vera Davidova
“The article discusses infection risk for the hematological malignancies for all the illnesses listed in the first paragraph but, somewhat unfortunately, to a lesser extent for MM considering the very limited patient experiences with the anti-BCMA products. Still, a number of observations and conclusions are very relevant for us, myeloma patients.”…
A topical article over at Myeloma Crowd regarding Car T and elevated infection risk for patients. It’s worth a read, though the data is still coming in. In the meantime, as with all things Myeloma and Immunosuppressed related, take recommended precautions and a tad more!
Thank you Myeloma Crowd for always being on top of things! (Click the hyperlink in the copy to see the article.)
Tags: Abecma Car T, Bristol Meyers Multiple Myelomla, Little Rock, Myeloma Crowd, UAMS MIRT
Posted in Abecma Car T, Misc, Multiple Myeloma | No Comments »
Nov 19th, 2021 by Lori Puente
Car T Conditioning (click image for paper link)
“Lymphodepletion before CAR T-cell therapy effectively prolongs the persistence of infused cells and increases the effectiveness of the treatment of tumors. Fludarabine is a critical component of a lymphodepletion regimen and greatly contributes to the efficacy of the procedure.”…
Ok, today is a little technical stuff for those of you interested and perhaps considering Car T.
Before receiving your re-engineered T Cells, you receive a Bridge Therapy over three days. The most common at the moment is Cytoxan with Fludarabine. Fludarabine is a new drug for us in Myeloma. It is specifically used to create lymphodepletion. Lymphodepletion helps increase the efficacy and duration of the therapy. It seems from this layperson’s limited science understanding that it clears the path, so the T Cells have little to no obstructions in their effort to find and obliterate the Myeloma Cells. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Car T Conditioning, Car T Recovery, Cytoxan Fludarabine, Little Rock, Lymphodepletion, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 17th, 2021 by Lori Puente
“Life can only be understood backwards; but it must be lived forwards.” – Soren Kierkegaard
Looking back is an interesting mental exercise in being liberated and going forward with more understanding, purpose, and confidence. At least that’s been my experience. Being STUCK in the past is nowhere I want to be. Second-guessing decisions is not fun either. Regret is a wasted emotion. I have them, of course. I acknowledge them. But I learn from them. Wisdom is sometimes hard-won but is so valuable in our perspective about life, our life. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Caregiver Reflections, Little Rock, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 16th, 2021 by Lori Puente
“I have learned that success is to be measured not so much by the position that one has reached in life as by the obstacles which he has had to overcome while trying to succeed.” —Booker T. Washington
What an unexpected day we had today as we got our labs and waited to meet with our Doc. Dave’s MM is in full retreat with his MM marker (Lambda Light Chain) down from 40 at the start of this to 0.3. His WBC is still bouncing around a bit which is expected, though a different experience for us. With a SCT, it’s a steady climb. So this up and down and up again is new for us but not unexpected for our doctor. Several comments of “remarkable” were uttered as he re-looked at all the daily labs gathered through this process in a lovely graph form. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Nov 12th, 2021 by Lori Puente
Dave’s Lambda (click to enlarge)
Grit, /grit/ noun, strength of character; perseverance, and passion for long-term goals.
Dave didn’t need any support today. Everything is recovering nicely. But nothing was sweeter than getting this lab result today!
The handwritten number is what they did before we headed into the Abecma Car T. We are on Day 11 post T Cell infusion. This is marvelous! Of course, we are going for zero! Dave finally cracked a smile! I do little happy dances with every milestone. Dave is more conservative and cautious looking down the long road.
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, multiple myeloma, UAMS MIRT
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Nov 12th, 2021 by Lori Puente
Dave, Me, Bart
“Looking at our old friends is all the therapy that we need in tiredness.” Unknown
Popping around in Infusion B the other day, meeting up with the other two Car T patients, I spotted Jean Ann the same time she spotted me, getting her husband Bart settled into a room. We met at our new patient orientation in Little Rock 13 1/2 years ago! We’ve run into each other from time to time over the years, and it’s always delightful. The last time we were heading out to the airport from our consultation while they were heading in. So it was a quick hug, hello, how are you doing? Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, J&J, Little Rock, multiple myeloma, Talquetamab, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 10th, 2021 by Lori Puente
“Be strong enough to face the world each day.
Be weak enough to know you cannot do everything alone.” – Author Unknown
It’s so much EASIER when you share an arduous journey with others who are in your boat. I’ve often written about the whole “misery loves company” saying. What does it mean exactly? I don’t think it means we want people to share in our misery as much as we find others in the same boat, and not being alone is what brings us some comfort. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Goodness Village, Little Rock, Myeloma Meet Up, support, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Misc, Multiple Myeloma | No Comments »
Nov 8th, 2021 by Lori Puente
Bob
“Every day I wake up, and I’m happy to be alive!” – Bob Esposito
“Hey, Fam. It has been a very long time since we have reached out. Most of you know that we lost our friend, mentor, and most beloved leader in early June of this year, 2021. We are never to recover but honored to have known and played music with Bad-to-the-Bone, Bob Esposito. We extend heartfelt thanks to all of you for your support over the years and our many transitions. Know that in some way, Bob will ride along with us all where ever we go. Ride on, dear friend… Peace.” From is Contra Blues Band FB post after his passing. Continue Reading »
Posted in Multiple Myeloma | No Comments »
Nov 8th, 2021 by Lori Puente
“We feel free when we escape – even if it be but from the frying pan to the fire.” – Eric Offer
Well, not precisely to the fire, but a new routine that will feel arduous over time. It feels good to be OUT of the hospital and back at our Goodness Village Home Away from Home Apartment. I asked them to have their housekeeping peeps come and clean it while Dave was in the hospital, and they did a fabulous job. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Goodness Village, Little Rock, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma, Our Life | No Comments »
Nov 7th, 2021 by Lori Puente
“Strive for continuous improvement, instead of perfection.” – Kim Collins
It is common in the Myeloma community to say “It’s a marathon, not a sprint!” This is so true.
Changing Dave’s antibiotic did the trick to stopping the cough and getting a STELLAR night’s sleep for both of us. I barely woke up when the nighttime brigade showed up to do vitals.
I have to personally thank Dr. Y, as she is known on the Myeloma Floor of the hospital, for listening carefully to our observations about Dave’s cough and the coincidence of the antibiotic drip with the increase in coughing. She and Dr. van Rhee changed it immediately and then set about doing many other tests to confirm there was nothing else going on of a more sinister nature. All those tests came back good and Dr. Y validated Dave this morning for being an observant patient and communicating well his view of what was happening. She is an excellent listener and didn’t dismiss his own personal observations. Continue Reading »
Tags: Abecma Car T, Arkansas Democrat Gazette, Bristol Meyers Squibbs, Goodness Village, Little Rock, multiple myeloma, Sean Clancy, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Nov 6th, 2021 by Lori Puente
“Progress is rarely a straight line. There are always bumps in the road, but you can make the choice to keep looking ahead. – Kara Groucher”
The day before yesterday, Dave started to have a dry hacking cough. Then yesterday it became worse, and last night almost unbearable. After eliminating some important things, we decided it might be the new antibiotic drip they had him on every eight hours. It is the “go-to” antibiotic when your WBC drops to those ridiculous low levels after chemo. Every time he got it, his coughing increased, getting worse each time. To the point, he could hardly speak. I admit I started to get a bit worried around 2 AM! Every time the next bag would arrive his coughing had dramatically subsided. I asked the nurse to relay what we had to the floor doctor (who wasn’t actually on the floor). I said, “Tell them his crazy caregiver insisted!” We didn’t get an answer, but he did acknowledge the message and was looking into it. It’s not a common side effect, but it is listed. It also mentioned that it could spike a fever, which Dave also had. He didn’t meet the threshold to change course, but it spiked to 100. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Nov 4th, 2021 by Lori Puente
“The voyage was uneventful.” – W.E. Bowman, Author
And when a person has both knowledge and a heart full of love and an ear ready to listen and a hand willing to help others, it is a genuinely GOLDEN experience! A shout out to our two Car T nurses on Floor 7 in the F wing at UAMS! Kathryn (Day) and Jamie (Night). A genius on Floor 7, in preparation for our Car T, decided it would be an excellent idea for us to have the same nursing team for the first three days straight. It was stellar. We didn’t need to re-introduce ourselves and make sure they knew this or that about us. And some of the neurological checks have a subjective component, so having them for the first crucial three days made it much smoother and comforting. We were really sad to say goodbye to them. As expected, however, our new nurse is also on top of things and knows her stuff. These gals do an excellent handing-off job as they turn things over. Continue Reading »
Tags: Abecma Car T, Brisol Meyers Squibbs, Goodness Village, Little Rock, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
Nov 2nd, 2021 by Lori Puente
Signage outside Dave’s room
“Begin with the end in mind.” – Steven Covey
Well, yesterday was T-Day! Four tiny little bags that seemed as if there was nothing in them at all! Each bag took about 10 minutes to dispense, and the cell lab expert was waiting with them in a frozen cooler. As each bag was dispensed, she would thaw the next bag, and they would all check and double-check that these were Dave’s cells.
It was pretty crowded in our room as things began to happen. Peeps wanted to observe the process—our doctor and others connected to Myeloma and excited about Car T being available to our patient population. We were totally fine with the teaching aspect of it all. Continue Reading »
Tags: Abecma Car T, Bristol Meyers Squibbs, Little Rock, multiple myeloma, UAMS MIRT
Posted in Abecma Car T, Caregiver Thoughts, Multiple Myeloma | No Comments »
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