“Look for what is good and you will certainly find it.” – Anne Perry
We have been on yet another unexpected journey. I’ve been posting snipets at my companion FB page called Riding the Wave (you can search Multiple Myeloma too and it should come up.)
My blog has been very quirky and weird over the last couple of years and since I hadn’t been blogging much, I just hadn’t gotten around to contacting my best ever web guru friend, Bari Mitchell. I worked with her at the University of Maryland in the Engineering College. She has retired and has helped me over the years with a few things and is always willing and quite stellar. Anyway, she got it all sorted out for me and now it shouldn’t be doing the funky things it was.
So I’ll be chronicling this next Myeloma Saga we are on for all of us. It helps to ground me to put my thoughts down amongst the details. It liberates me to do it so I can more fully focus on Dave. But it is also helpful to other peeps on this journey to not feel alone and maybe have a different perspective, or be validated in theirs.
Dave will be on the new Abecma (pronounced Ah-Beck-MA) Car T therapy that has been newly and fully approved by the FDA for relapse/refractory Myeloma patients. They had an insanely successful trial in Europe and now we have this amazing opportunity here in the USA. My understanding (I’m still trying to get information) is that but a few doctors and Myeloma facilities are delivering it currently. Stanford is one. UAMS is another. I don’t know who else is. When I do, I’ll post it.
So how fortunate we are that our doctor of many years, and the facility we have traveled to for over 13 years is one of those who was chosen! We don’t have to create new relationships or learn our way around. We are seasoned MM patients in Little Rock. We’ve made friends here and have contacts. We are staying in an apt we’ve stayed in before, provided by Goodness Village. A non-profit that has about 20+ apts for us (and others who come to LR for long term healthcare). Beautifully decorated and appointed, with just the right amount of things we need to live here comfortably for the long haul at a ridiculously affordable price. It’s 5 mins from the Institute, and I have everything with in walking distance I need.
So just to catch you up, quickly…
Dave went out of remission a few years ago and for the first time he isn’t responding to the therapies prescribed. A common story in Myeloma. So we’ve had a few bumps a long the road, but for the most part we just kept living our lives and enjoying it as fully as we could. Then of course covid. Which really didn’t change a thing for us, except that I was locked down too. And I couldn’t go into the hospital at home or here on our visits. That was different and very isolating for me. Dave had some interactions while I just dropped him off and picked him up. So it was a new challenge.
Dr. VanRhee kept mentioning to Dave getting the Car T. Of course I had heard of Car T, found it wildly fascinating, but I didn’t really engage with him much about it. I’ve found over the years that I can chase these things with such effort that I’m down the rabbit hole and then something else entirely ends up happening. So I’m very selective in doing that, and I was just not paying attention as much as I had in the past, to be brutally honest. So Dave was approved as a patient we were told, and things began to get into motion. They scheduled him for a T Cell collection mid August. We had also started doing HBOT again (hyperbaric oxygen treatment). I suggested it to Dave as one of our early successful actions. Unfortunately our clinic closed and the one we found didn’t have commercial HBOT chambers, but the home version. Little blow ups, that only do 1.0 atmospherics. But it was inexpensive and close by so we just decided to go for it. He did 4x a week for an hour or more. It absolutely helped with his fatigue. We also hoped it might help with his immune system which was schnockered. I think his WBC was around 0.8 and his ANC was below 1,000. Dr. VanRhee was worried about being able to collect enough T Cells, so we thought we would do more to maybe help that. He also took him off all chemo to help his immune system recover. With the August collection date set, it was a reasonable calculated risk that we both wholeheartedly agreed with.
But then… Bristol Meyers cancelled ALL collections in August. They allow two patients per month per facility. They set the date. It’s immovable. They cancelled for several reasons, but suffice to say, it put us in a precarious situation to have it now in Mid September. Another month with no treatment and Dave’s Myeloma active.
I will do another post about what happened, but know that we made it to Arkansas by hook or by crook and Dave did collect his T cells on the appointed date and they are in the lab in NJ at BM! That his immune system is indeed into normal ranges, though his Myeloma is doing its thing.
I hope you’ll follow this journey with us. Leave comments, and share with others in Myelomaville.
Love you dearly,
Lori
