24 October 2023
Joel picked me up around 8:40 am and we avoided I-95 and made it to the Cancer Center around 9:15. They called me back to Dr. Velez’ examination room around 9:35 which was a few minutes early for the appointment. After all the vitals were out of the way, Dr. Velez showed up around 10:00 am with his nurse Danielle. I introduced Joel and the questions began.
I told him upfront that if I knew then what I know now, I would never have started chemotherapy. The last week has been one of the worst I’ve ever experienced. He was a little taken aback by that and immediately looked to see if I was dehydrated. He pinched the skin on the outside part of my hand and indeed it did stay pinched for a while – a sure sign of dehydration. I was a little surprised at that since I’ve been pumping Gatorade, Enterade, and coconut water like crazy. Of course, I’ve also been peeing like a race horse.
They decided to not wait until Friday for the next hydration infusion but to schedule me for tomorrow. Someone from scheduling will call me about the time tomorrow and Joel has already volunteered to drop me off and pick me up.
One of the first questions I asked was about the Dana-Farber protocol that required 12 infusions of Taxol. He said he understood but that the first infusion I had on June 5 with four drugs was taken into account. I have 13 more sessions of Herceptin scheduled every three weeks apart.
As to the question of further cancer screening, he said there were two screenings he could do. The first screening is covered by my insurance and tests for circulating tumor DNA for the cancer that was removed. That will be done tomorrow after the hydration infusion – a simple blood test. The test is put out by a company called Natera and the test is called Signatera. That will be done every 5-6 weeks. They will be looking for a 0.00 reading for circulating tumor DNA for my HER2 high risk cancer.
After completing my 13 sessions of Herceptin, I’ll be checking in with Dr. Velez every 6 months – probably for life.
In about a year’s time, they can do what is called a Galleri test put out by the GRAIL company which is not covered by insurance and runs $800-900 per test. It assays for 42 different cancers. I plan to take advantage of that test as well.
MUGA/ecocardiogram scans will be every 3 months. He has no issue with Jardiance from the endocrinologist and I asked if Dr. Jellinger could consult with him. He said yes, I had his phone number and Dr. Jellinger could call him anytime.
As to my sleep problems, he said Xanax is good for a few hours of sleep but that Temazepam was a better choice. It comes in 5mg, 15mg, and 30mg capsules and he recommended the 15mg. It will last longer than Xanax as a sleeping aid.
He was a big advocate of my starting massages again. When I asked about what to do on the left arm where the lymph nodes were removed and they no longer will take blood pressure on that arm nor allow injections, he said to tell the therapist to massage upward from the wrist to the upper arm, not downward. Otherwise it would be fine.
He looked over my list of symptoms from the Taxol treatment and said he was confident that 90% of them would go away or be abated to a significant degree. The $64,000 question was about the peripheral neuropathy. He hedged and said some people fully recover, some have residual neuropathy forever. He did recommend the simplest medicinal treatment first – 600 mg of alpha lipoic acid, sold at any vitamin store. When Joel and I left, we stopped at The Vitamin Shoppe (on the way back home) and they had it on sale from $47 for 120 capsules to $20. Perfect timing!
He said there were various other medicines we could try if alpha lipoic acid didn’t work but to try that first. He also asked if I was opposed to acupuncture. I told him I’d try anything to get rid of the numbness and pain. He recommended an individual associated with Hollywood Memorial where I have access. I’ll give the medicine a try first and then maybe schedule the acupuncturist.
I also talked about Dr. Fingado and getting steroid injections in my hand. He agreed that was OK.
As it is, I’m waiting for someone from Holy Cross to call to schedule my hydration therapy for tomorrow.
Joel drove me to Walgreens and I picked up the Temazepam (the pharmacist filled it right there) and the urinary ketone strips. It seems that when taking Jardiance, you may build up ketone levels in your blood stream. I now have to pee on a strip and match it to a chart to see if I’m accumulating ketones. If so, I have to let the endocrinologist know.
Dr. Velez promised me I would start to feel much better within a week’s time. I told him I would hold him to that and if not I would come looking for him with friends from East St. Louis and pay him an unannounced visit. I’m not sure he thought I was joking.
I now need to call Dr. Fingado’s office and schedule injections into my hands to alleviate the arthritic pain that keeps me awake at night. I’m getting tired of wearing gloves to bed to give me some warmth and pressure on my hands.
Stay tuned!
