Dave and I went to see Dr. Patel on 8/17 where Dave reported he’s been getting between one and three miles of walking in each day, in intervals that are a substantial fraction of a mile. He’s also noticed that his breathing and neuropathy have gotten better, with no problems climbing several flights of stairs at a time. Weight stable, but high; PSA up to 0.1, LDH down to 186, WBC 3, Hg 12.5, fasting glucose 113, blood pressure 118/74, 96% oxygen saturation — nothing unexpected. Dave reported that he’d had a perfect sinus rhythm for two solid weeks as well. Resting pulse was high at 105, and there was a low grade fever. I didn’t write down the number, but he felt fine.
ClonoSEQ results came in the next day and were negative, which means there is no sign of nucleic acids related to the DLBCL in his blood. Dr. Patel said it made sense to treat this result the same as he would treat a clearly negative PET, i.e. follow up every two months in the first year, every four months in the second, and every six months in the third. After that, relapse probability drops precipitously. Recurrence of the same cancer after five years occurs in less than 5% of cases.
Dr. Patel referred Dave to a pulmonologist, recommending that he ask him or her to verify that he has sarcoidosis. He also referred him to a physiologist to help him deal with his neuropathy and to address any mobility issues he might have arising out of his treatment.
While Dave does not need to get re-immunized for anything, Dr. Patel suggested that he get the flu vaccine in September or October, then repeat it in December, since Rituximab might have reduced his response to vaccines, at least in the short term.
Dr. Patel also suggested that Dave may want to remove his port six months post-chemo if there are no indications that anything is wrong. Dave wasn’t too keen on that suggestion. He doesn’t find the port to be that much trouble and he really appreciates how simple it makes follow ups.
Dave was due for Lupron on Monday, but there’s a shortage, so they gave him Eligard (22.5mg, subcutaneous) instead. The purpose of this alternative drug was the same, to keep his prostate cancer in check. I continue to encourage Dave to see Dr. Lily (or another urologist) as soon as practical so he can get a better assessment than just PSA (e.g. DRE). It would be nice to have at least two lines of evidence suggesting that cancer is under control. Additionally, a urologist might have other advice.
Finally, Dave reported to me that he reacted to the Eligard with vomiting and shakiness. In fact, he said that it was so bad that he almost called 911. He reported this to Heidi the next day who said she suspects the Lupron shortage may be long term, but that it may be possible to control these side effects with antiemetics. As I write this, I actually find myself wondering if this might have been related to Dave’s low grade fever instead of the drug. I’m encouraged by the negative ClonoSEQ. It may be he just had a bug and that potentiated his response to the drug. Either way, it makes sense to take precautions when he’s due again in a few months.
Dave’s next appointment with Dr. Patel is 10/19.