I haven’t posted for a while because I've been waiting to get the results of various recent tests (CAT-scan, X-ray, PET-scan, sputum test, and all the ongoing blood tests). I wanted to go over some of the results with my Kaiser oncologist as well as my Stanford oncologist. Dr. Green at Kaiser thought the latest results of the PET scan showed "a favorable response to the myeloma." My M-spike (a measure of the abnormal myeloma cells in my plasma) dropped from 2.1 before CAR-T to 0.5. Hopefully, it will keep dropping as close to zero as possible. While it's currently not possible to be cancer free and get rid of all the myeloma cells, it may be possible to achieve what's called "minimal residual disease" (MRD). MRD is an advanced test which looks at one million cells not just a small number of cells to extrapolate how prevalent the disease is. This test isn't used until the regular tests show the disease approaching zero.

I had an appointment on Thursday to meet with Dr. Sidana and her team at Stanford, and she weighed in on the results. She was pleased at the progress in my multiple myeloma after the CAR-T procedure back in April. This corroborates what Dr. Green's assessment. The PET-scan shows that most of the active lesions are now inactive. As I mentioned in a previous posting, although inactive, these lesions will never heal and will remain "open" and leave me susceptible to fractures.

That was the good news. Dr. Sidana was alarmed that the PET-scan results showed opacity in both lobes of my lungs. When I saw the pulmonologist at Kaiser (Dr. Kwaan) three weeks ago, he felt a bronchoscopy wasn't warranted at the time. When I contacted him again a few days ago, he initially still felt like we should hold off doing a bronchoscopy. However, Dr. Green my Kaiser oncologist persuaded him to schedule a bronchoscopy. Unfortunately, the soonest Dr. Kwaan's office could schedule a bronchoscopy was not for another month (August 14). Dr. Sidana was adamant that this wouldn’t do. "You need to have a bronchoscopy asap."

Dr. Sidana explained why she was concerned. A bronchoscopy could determine whether or not what's going on in my lungs in fungal. Fungal disease in the lungs is difficult to treat. Not only that, but recent research shows that there is a higher incidence of lung fungal disease among patients who've undergone Carvykti's version of the CAR-T procedure. There is also a higher degree of mortality among those patients. Dr. Sidana wanted to rule out a fungal issue. She said if she had seen these results from my PET-scan three weeks ago, she would have taken immediate action to determine whether it was a fungal complication. Dr. Sidana persuaded Dr. Green at Kaiser to request a sooner appointment for a bronchoscopy. A bronchoscopy has now been scheduled for this coming Tuesday July 25. Every medical staff person I’ve talked to says it’s not the most pleasant experience, but at least I will be partially sedated.

Dr. Sidana also wanted me to see an infectious disease specialist at Stanford. This doctor is a renowned specialist and is also familiar with patients who have undergone CAR-T. Because he is a Stanford doctor, this would require authorization from Kaiser in order to see him. At first, Dr. Green declined to authorize the consultation, saying he would rather I go to the infectious disease doctor at Kaiser.

This feels like a bit of a tug of war between Kaiser's way of doing things and Stanford's. However, both Dr. Sidana and Dr. Guilliere (my Stanford oral surgeon) have reminded me that Stanford sees hundreds of myeloma patients and now an increasing number of CAR-T patients. So, whether they're an oral surgeon or a pulmonologist at Stanford, they're much more familiar with issues around multiple myeloma and CAR-T. In the end, Dr. Green at Kaiser approved my seeing the infectious disease doctor at Stanford.

Although it takes some effort for me to see the doctors at Stanford (1 ½ to 3 hour drive each way depending on traffic), I do feel a bit more confident in their medical experience for patients like me. I’m still a big fan of Kaiser but, as mentioned, the doctors there don’t have the volume of multiple myeloma or CAR-T patients compared with Stanford.

Overall, I’m doing ok but pretty exhausted a lot of the time. I also find that I become short of breath more often even without much exertion. Despite that, I’m determined to continue taking my daily walks to keep up my strength. Even though much of the country is having extreme heat, it's comfortable here and I do enjoy a bit of warm weather compared to the record cool weather we've been having in the immediate Bay Area. When I asked Dr. Sidana whether or not I still needed to avoid doing any gardening, she was emphatic: “Absolutely NO gardening of any kind.” In the meantime, I’ve been started back on a fungicide (Posoconozole). I’m still losing weight (down to 135) even though I’m eating three full meals a day and then some in-between. Eating is a bit complicated as I have certain meds that I can’t take until 1 hour before or 2 hours after eating. I several pill organizers and Excel spreadsheets to help me stay on track with the five daily times I need to take my meds. All this certainly keeps me out of trouble.

*Chaparral Snowbell (Styrax redivivus)