I had my first new round of treatment yesterday. This is a weekly “cocktail” of Kyprolis (infusion), Cytoxan (12 tablets), Dexamethasone (5 pills) and Zofran (2 pills). I’m keeping Kaiser in business! I was a little anxious -- not only because there’s a 50-50 chance of unpleasant side-effects like nausea, vomiting and loss of appetite. Those are the lesser side-effects. There are much less frequent issues of serious heart or kidney problems. But, I also realized that this is another attempt to stop the cancer from spreading. If this doesn’t work in 2-3 months, then I’m off to a more complex and elaborate procedure called CAR-T therapy which involves several intermittent weeks and months at Stanford.

Right before the infusion, I met with my oncologist Dr. Green. We had a very long and frank discussion. He admitted that he was worried about the rapidness of the myeloma – especially since my cancer had been nearly indetectable for almost 4 years. He showed me the PET scans of my skeleton – one from a couple years ago, and one from a couple weeks ago. In the earlier scan, there were almost no black “dots” throughout my skeleton -- the dots indicate active lesions. The more recent scan had many black dots throughout my skeleton. He felt this newest regimen might turn things around. This new regimen has almost a 60% success rate – that is, resulting in slowing or even stopping the cancer from progressing. I asked why he thought there was such a sudden change in my cancer. Also, why the regimen I had been on for the past few months has worked for many patients to some degree (some have been on it for 4-5 years), but didn’t work at all in mine. He explained that it seems likely that I have a much less typical “clone” of myeloma which is quite aggressive and doesn't respond to the previous meds. I said, “Bummer.” He said, “Yes, Bummer.”

I did have a rather frenzied day yesterday in preparation for my treatment. As part of the routine, I’m supposed to get my labs done in the morning before my infusion in the afternoon. I went to Kaiser Berkeley for the blood draw since it’s only four blocks from home. Just as I had completed having 8 vials of blood drawn, the oncology department called me to tell me not to do the blood draw (too late!) as the results wouldn’t come over to Kaiser Oakland in time for my infusion in the afternoon. I was advised to drive over to Kaiser Oakland and to have another blood draw which would get to the infusion clinic in time. All in all, I ended up having 16 vials of blood drawn. I’ve now worked out a better system, although it means having my labs done at Kaiser Oakland on Sunday mornings. This will give the results plenty of time to be reviewed for my infusions on Monday afternoons.

The good news is that I haven’t had any of the yucky side effects yet. But, I was only on a “starter infusion” – about 1/3 of the dose I’ll get next week. Fingers crossed. Dr. Green also felt that, although my bones are indeed fragile, as long as no fractures show up and I’m not doing extreme sports like rock climbing, it’s ok to continue with my water aerobics, hiking, walking and biking. The not-so-good news is that it looks like I might have the beginning of jaw necrosis (bone death of the jaw). This is a rare condition in myeloma, often due to taking Zometa which ordinarily helps strengthen bones – except in rare cases when it basically does the opposite. There are less aggressive treatments to deal with jaw necrosis like antibiotics, and more aggressive treatments like bone scraping. On to the orthodontist. Another bummer. I guess I’m just special.

So as not to end on a downer… I had a wonderful Thanksgiving and then a couple days later a Birthday dinner. Everyone was vaxxed, boosted and took antigen tests before we gathered. It was such a treat to actually see folks in the flesh. I had to limit how many people could gather since now I'm even more immunocompromised and have to worry not only about COVID, but the flu and other viruses. But, I’m hoping to continue small get-togethers over the next few months. Stay tuned.

Thanksgiving 1957 -- me, Grandma and Mom. Dad took the picture, and he also cooked the turkey.