New Plan for Jon

 The executive summary, for those who really don't need all the excruciating detail:

We met with Dr. Imus at Hopkins, and with Alissa's help, we decided on a plan. No guarantees that it will go smoothly, but we all agreed this is the best course of action -- Jon will go on a "bridge treatment" to keep him going until they can get everything organized for CAR-T in about three months.  This will be something like the bone marrow transplants, from the patient's perspective, but the science is different. He will need to be an outpatient again, staying at Hopkins, for at least a month. If it works, his body should take care of the myeloma after that. If it doesn't work, we will think about that later, but it won't be good.

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The longer version, not terribly technical because I don't have all the medical jargon, but you will learn more about blood cancer than you might have wondered about.

Briefly reminding you of how we got here:  Jon was diagnosed in 2009 with Multiple Myeloma and has had 15 years of chemotherapy of one type or another. He has done well, and he had a bone marrow transplant in 2010 that gave him a couple of years off from meds. In 2022 he had another transplant that didn't do as much good, and he started another round of chemo after a few months off.  Recently he has had some radiation treatments to deal with lesions on his bones (a consequence of MM) -- they zap the cancer where it is all clumped together and kill that one spot and it feels better.  It has recently come to light that the markers they have been checking for 15 years are no longer giving good information ("plasma isn't behaving like plasma anymore"), so the only way to track the activity of the disease is by occasional PETscans. MM is plasma cells gone haywire, reproducing themselves to the point where they crowd everything else out in the blood. There are nuances, but I don't understand them.

About a month ago, Jon's oncologist at Kaiser stopped his infusions because they weren't working, and she referred him back to Hopkins.  She thought they would say the next step is a highly toxic drug (teclistamab) that needs to be administered at Hopkins for a few weeks to be sure that his body can tolerate it.  After that he would get weekly shots of it at Kaiser. She thought it was possible that the disease is progressing too quickly for him to have time to wait for CAR-T to be set-up. This sounded very scary.  

It took until today to get an appointment with Dr. Imus (a very nice doctor who specializes in MM who we have worked with before).  Alissa came with us. She doesn't deal with MM because she is a pediatric oncologist and little kids don't get this, but she can ask plenty of educated questions and can understand the answers. It was wonderful to have her there.

Dr. Imus started out by asking how Jon is doing. I had coached Jon on this yesterday because I know how he answers general questions. "How are have you been?" "Okay." The questions have to be very specific to get a useful answer.  With Alissa and me there, he had to be a little more forthcoming.  Then Dr. Imus explained how teclistamab works (not even going to try to explain this one) and all the possible side effects. It sounds pretty intense. He says it has had really good results -- 50 - 60% success. It has been approved since 2022 so they don't have a ton of data yet.  As Alissa said later, that is such an oncologist thing to say. To a regular person, those percentages don't sound awesome. When they say there is a 50 - 60% chance of rain, I generally think it might not rain. Then he told us about some other meds that have been developed. They sounded pretty terrible in their side effects, but that is where we are now. Fingernails falling off -ugh. Nausea -- bleah. 

Jon said he had thought that we might be headed for CAR-T, and Dr. Imus explained that one too. It takes a few months (maybe three) to get that all set up, taking out some T-cells and retraining them in a lab to attack and kill myeloma.  There is some chemo involved, as with the bone marrow transplants.  It would mean moving back to Baltimore for 30 - 45 days.  It has a 95% rate of some level of success (that wears off eventually), and the other 5% die. If you win, you win big. If you lose, you were on the path to dying of myeloma anyway.

Alissa asked him to explain the difference between the bi-specific therapy (teclistamab) and CAR-T. They are not the same, but they both use T-cells to attack the cancer.  In the second instance, the T-cells are trained in a lab and they become part of your body. I just went to a website for this description of teclistamab: "One side of TECVAYLI® binds to proteins called BCMA, which are found on multiple myeloma cells (as well as some healthy cells). The other side binds to proteins called CD3, which are found on your T-cells. In doing so, TECVAYLI® is able to activate the T-cells in your immune system to destroy the multiple myeloma cells in the rest of your body."  This is administered by a weekly shot. You can't have these treatments one after the other. It is one or the other.

After listening to Jon talk about how he is doing, and looking at some of his lab results, and being nudged by Alissa to look at the bigger picture (comparing the possible outcomes), Dr. Imus said he thought it was possible that Jon could handle CAR-T. He has to stay healthy enough until then and he will have to take some pretty nasty drugs in the interim. He will be immuno-compromised for the rest of his life, but he already is, and we don't know how long the rest of his life is anyway.

So now we wait until all the preparations can happen. Dr. Imus has to talk to the Kaiser doctor, we have to get approval, arrangements have to be made, Jon needs to get a line put in so they can take out a lot of blood cells to get reprogrammed, he takes some drugs, he feels nauseous for a few months, then we move back to Baltimore in August. Crazy.  Rebecca will be the other caregiver.

None of this sounds like fun, but neither is getting sicker and sicker.  It is good that Jon said he thought he was headed for CAR-T, and it is good that Alissa asked educated questions, and it is good that Dr. Imus has been working in the world of transplants and new therapies, so he could see that maybe this is a possible path. He told us to go home and talk it over, and we told him the decision was made already.

So that is where we are.