Last Thursday (11/16) after having had the endoscopic procedure (ERCP) to remove my plastic stent on Monday, I restarted my Chemo regimen of Irinotecan, Leucovorin and 5-FU. All my blood lab tests were heading towards normacy except that my cancer marker, CA 19-9 went sky rocketing to 600+!! Instead of continuing on the ‘inadvertant’ Chemo holiday, Dr. Picozzi and I decided to get some anti-cancer agents on board while I am seeking other options.
Whereas my PCP really defers the cancer treatment to other experts, but he wanted me to have good rests at night and yesterday he prescribed Valium for me to achieve that. He also adjusted my B/P medications to keep that under control.
Linnea and I fly out to Baltimore tomorrow, Thanksgiving Day for our conference with the Johns Hopkins pancreatic experts on Monday and Tuesday. We are hopeful to gain fresh insights and other thoughts as to future courses for us to take.
Have a Blessed, Grateful and Happy Thanksgiving, all my FANS and Cheer Leaders.
We’ll keep you up-dated.
Yesterday I had an Endoscopic Procedure done under General Anesthesia, (Endoscopic Retrograde Cholangio Pancreatography) to remove the plastic stent placed in July near the Dome of the L lobe of my Liver. The stent is only good for 3 months before it clogs and possibly gets infected. Since I have not had Chemo for 4 weeks, I deemed it most advantageous to do the procedure now. Again, the Team Virginia Mason came through. Though normally it takes weeks of advanced notice, they fitted me in yesterday’s schedule. Then, I can resume Chemo on Thursday this week. The Dr. who did my procedure yesterday just came from The Johns Hopkins Hospital.
My calls to Hopkins were also very fruitful. Although we could have rushed to get on their weekly consultation for today, 11/14, we elected to be on the 11/28 schedule, leaving Seattle on Thanksgiving Day for Silver Spring, MD to stay with Marco and family for a week.
Meanwhile, I’ll update my general physical with my PCP Dr. Hurlow regarding my B/P medications on 11/21, an appointment made 2 months ago. I’ll also have a chance to have my regular dental hygienist clean my tartars tomorrow.
Thanks again for all your thoughts of good wishes, your continuous prayers of healing and all your good vibes coming my way.
We made a visit to Virginia Mason today to discuss with Dr. Picozzi the result of the PET scan completed last Friday. The result is “puzzling.” There is no new metastasis anywhere else noted. Good. The solitary lesion in the liver remains little changed compared with the study done in February. Good. But there’s increased cancer growth activity in a portion of this lesion and there’s also decreased uptake in other parts of the ping pong ball size metastatic tumor. Interpretation? The present Chemo Treatment (together with my own immunity) has contained this tumor in part but certainly has not “killed” it. Since I am near the end of my total dosage of Oxaliplatin, (and I am getting more paresthesia in my fingers) we made a decision to stop my current chemo regimen. Dr. Picozzi offered three options: 1. Take a chemo holiday and see what happens. 2. Try another chemo combination. 3. Biopsy the liver lesion again to verify the tumor cell type. I decided to retest my cancer marker CA 19-9 which jumped up to 335 from 287 last week. Not taking any chemo holiday, press on with different chemo combinations.
Linnea and I both asked if he had any other patients with similar lesion and responses to mine and he admitted that my tumor and my responses are unique. We also proposed getting a second opinion among MGH in Boston, JHU in Baltimore or MD Anderson in Houston. Dr. Picozzi strongly suggested Johns Hopkins. I will make connections tomorrow to arrange a suitable time to make a trip to Baltimore.
Again, thanks for your interest and your love. Appreciate the continual prayers.
As the Chemo Treatment with Oxaliplatin for me is approaching my maximum dosage tolerance, I am quickly facing a management decision point. I have consulted my 1970 Johns Hopkins Medical School classmates as to their collective expertise. Surprised me that none of us went into pancreas as a specialty. Of course many suggestions were offered. The most logical and intriguing suggestions have been a simultaneous treatment of Trans Arterial Chemo Ablation (TACE) i.e. ablation thus clogging of the arteriole vessel supplying the metastatic liver tumor lesion and combine that with the new strong Proton stereotactic body radiation therapy (SBRT) to the growth.
October 31st, I checked in at Virginia Mason while Linnea transported my Mom to spend the day with my cousins at their home in Lynnwood and then return to accompany me through my chemo infusion. The nurses accessed my ‘port’, drew blood for tests and sent me to get my CT scan at 10:00. My Chemo Rx was to begin at 2:00 so I had time on my hands. After my scan, I filled my prescriptions and then I went to my surgeon’s office hoping that even without having any appointment if he had time, he’d see me for a few minutes. Dr. Helton was very obliging; he called me into his office almost right away. We discussed the possibility of surgical removing part of the liver with the metastatic tumor. Dr. Helton was totally against that idea. He used to do just that, but discovered that the success rates of survival were very bad. Patients’ quality of life drastically deteriorated. Surgery dramatically alters the immune system which in me seem to be holding the tumor in check. We looked at the CT scan just taken and found that the size of the tumor had not really changed. He will not do surgery to/for me and he is the Chief Biliary Surgeon. If I really want the lesion out, he’s sure I can find someone willing to cut on me. His advice for me is to continue living life as I am doing and enjoy good quality as long as possible.
I met up with Linnea, had lunch and went back to the Infusion Center. There the nurse printed a copy of my morning blood work for us. All the findings are very similar to previous tests except that the tumor marker now is at 289, indicating a continual rise over the past 8 weeks, first more slowly, now considerably more rapidly! Next Dr. Picozzi stepped into our room. He was armed with this information. Additionally he had also already consulted the radiologist re: the “fuzzy” borders now surrounding the liver tumor. The possibilities: #1. The cancer has become more active and has broken through the original ‘shell’. (This indicates the current chemo regimen is not very effective.) #2. The body’s immune system is at work and has established the area as the battle ground causing inflammation in the neighborhood. (This would be very good news!) #3. There are new lesions growing and secreting the added CA 19-9 protein that is not detected or visible via the CT scan.
Dr. Picozzi suggested no treatment for this session. He scheduled a PET scan for Friday and we will re-evaluate the situation with Dr. Picozzi on Monday November 6th. We drove to pick up Mom in Lynnwood and Melissa Ye, a young genuinely fine niece of mine, treated us and some relatives to a delightful Sichuan dinner.
This is the most up-to-date development along my medical journey. Thanks for reading this report and for your continual prayers and good wishes.
I’ll be writing another update next week.