Exit Interview with Dr. Imus

Until today, Jon was still officially a patient in the IPOP, and he was supposed to call them if he had anything to report. Today he had a video call with Dr. Imus, and he is now a Kaiser patient again, with his next treatment scheduled for July 2.

Jon reported all of his current symptoms to Dr. Imus. It is a kind of a long list, but nothing is life-threatening or involves his cognitive abilities, thank goodness.  He has a new rash, his taste buds are stuck on Sawdust Mode, and the neuropathy in his feet is getting more noticeable.  But on the plus side, he doesn't have thrush anymore, he feels stronger today than he did just a few days ago, his back was strong enough to stand up long enough to make a big pan of lasagna, and he feels like he is getting better every day.

For a few days, it seemed that he was sliding backwards.  He felt like he was falling apart. But now it seems like he is gradually moving forward.  Today I saw Jon smile more than I have seen him smile in a long time.

The plan is for him to continue with the talquetamab until there is evidence that it isn't working. Right now we have no way to tell, except that he is feeling better. Dr. Imus says he takes that as a good sign and he doesn't think it is a coincidence.

Jon asked the question that Alissa keeps asking -- why can't we collect CAR T-cells right now and hold them so we won't have to rush so much if/when CAR T seems to be the next step. Dr. Imus said it was a very good question -- at the moment there is no protocol for freezing/saving cells. The FDA won't let you do that. There haven't been studies to show that it is safe/effective. There is some hope of a study starting soon at JHU.

Jon pointed out that the only way we can tell if this treatment is working is to have two PET scans, with some significant amount of time between them.  Dr. Imus asked, why two? And Jon said that the lag between the last scan and the beginning of the treatment was about two months, and therefore we don't have a good baseline. Dr. Imus agreed with that analysis, and also agreed that we should schedule a scan sooner than later, to establish a new baseline. 

Jon asked again about his status as an immunocompromised person, and Dr. Imus said again that he is extremely immunocompromised with no real hope of coming back from that. That is why he is on so many prophylactic drugs, to try to keep the infections at bay.  When Jon asked if he was supposed to stay away from everyone, Dr. Imus said that he should be careful but what is the point of taking all this medicine if he can't live his life? He agreed that wearing a mask in situations that feel hazardous is "low hanging fruit" and a good idea. But having people over for dinner is part of life, and if they don't have symptoms of illness, we should do it.  

This doctor listens patiently to all of Jon's long descriptions and back stories and he laughs at Jon's jokes and he makes Jon feel like his case is interesting and important. It is extremely reassuring to have this doctor paying attention. I feel that it is likely that Jon will be back on his patient list again. For now, we are returning to the world of Kaiser -- with more information, more symptoms and the invitation to get in touch with Dr. Imus if we have any new questions.

Comments

  1. Cookie MandellJune 22, 2024 at 8:20 AM

    Thanks for this update. Good that Jon advocates for himself -- and has a family who stay on top of everything, too. So, so glad he's feeling stronger but especially delighted to hear he's smiling. Jon's smiles are the best. :)

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