Cancer Journey of a Secular Buddhist

Yas and I flew to New Orleans last week (4/20-24) to see my step daughter Shaye and her girlfriend Kyndra. We stayed at their house, which they have been renovating and we went to the New Orleans Jazz Fest on Thursday and flew back to Boston on Friday.  It was a wonderful time.  Alas, traveling as a cancer patient has its risks. In the week before we left for New Orleans I started to lose motor control of my left foot and the muscles in my left leg began to weaken. My neuro-oncologist switched me from Prednisone to Dexamethasone and said that if the symptoms became worse I should go to the Emergency room and get a CAT scan of the lesion in my right frontal cortex to make sure there was no active bleeding.  My mobility worsened a bit in New Orleans so I went to the Emergency Department at the local hospital and had a CAT scan.  The ED Attending doctor talked to my neuro-oncologist and the lesion had actually shrunk a little, so they let me go home after just a few hou...

 After getting fairly good news this week about my immune system continuing to kill my cancer, I woke up last night with an uncontrollable spasm in my left foot and calf that lasted about 3 minutes. After it stopped my left foot was paralyzed for about an hour an then slowly regained movement. This happened again around 3:30 am. We talked to my neuro-oncologist (Dr. Ho) who I really like. She prescribed another medication specifically for Focal Seizures like this which I'll take twice a day. There seems to be a little more inflammation around the site where they removed my first brain tumor and this is likely the cause of these seizures. The MRIs above show the tumor site this week (on the left) and in Feb (on the right). The tumor site is at the top of my brain, a little to the right of the midline. There probably isn't any cancer there but there is some blood. These focal seizures are a little annoying but they are short (2-3 minutes) and not painful and not dangerous, though...

Every two months I will be having a CT scan (neck to thigh) and an MRI of my brain to monitor my lung cancer. I had 12 weeks of immunotherapy (Pembrolizumab) starting last October and it taught my T-cells how to kill my cancer cells. The scans have shown the tumors decreasing in size every 2 months. Alas, my T-cells also attacked my liver so I've been on steroids (prednisone 80mg/day) for two months and I'm now tapering down (currently 20mg/day) and will be off it in 2 weeks. The prednisone did not rescue my liver, so my hepatologist also put me on CellCept (2000 mg/day) an immunosuppresssor often used for transplant patients, and that has returned my liver function tests to near normal values. I'll start tapering that in mid May. The prednisone has many side effects, giving me a puffy face and fat deposits on my neck and abdomen, and increased fatigue, and skin rashes; so I'll be happy to be off it! My most recent CT also showed a possible metastatic lesion in my sm...

My immune system started attacking my liver at the beginning of the year which resulted in my liver enzymes (ALT, etc.) increasing. My doctors put me on a heavy dose of steroids (80 mg of prednisone each morning) which usually will bring those liver numbers down. the normal range is 0-40 U/L but the numbers kept rising and after a month they were over 1000. My Hepatology team decided to put me on CellCept, an immunosuppressor often used to prevent rejection of organ transplants.  That did the trick, 80 mg of prednison a day and 2000 mg of CellCept slowly lowered my LFTs (liver function tests) to the normal range in a month. For the next two months I will taper off of the prednisone (lowering the dose by 10mg each week for 8 weeks) and then we will taper off the CellCept! In the beginning of April I'll get a brain MRI and a CT scan of my chest, abdomen and pelvis and monitor the metastasized lung cancer tumors.  If they are stable or shrinking then we will continue to monitor e...

  I met with my main oncologists today, Drs. Costa and Caradonna, and we reviwed my medical history and made a plan.   My brain MRI came back with no new mets and some of the lesions have shrunk.  My LFTs dropped (by about 50%) today.  They are still quite high but moving rapidly in the right direction. I have an appointment with my hepatologist on March 5th and if the blood tests are close to the normal range then they'll start tapering me off the CellCept and Prednisone, and I'll only be on my anti-seizure medication Kepra, which I can stop taking in May. We probably won't do any more Pembrolizumab (Keytruda) infusions; partly because I had a Stage 3 adverse effect as my immune system has been attacking my liver; and partly because it seems that the Pembro has trained my killer T-cells to effectively kill my cancer cells, so I don't need any more immunotherapy at this point. From now on I will just be getting CT and MRI scans every two months and we hope (and ...

I was discharged from the hospital on 1/23 because my liver function blood tests (ALT, AST, Bilirubin, ...) had stabilized. These are indicators of damage and inflammation to the liver. My ALT was around 300 (ten times higher than normal) but it was steady for several days so they discharged me and scheduled a biopsy of my liver for the next week, 1/28. When they ran the labs before my biopsy, my ALT had tripled to 907, about 30 times the normal level so my oncologist asked that I be readmitted to the hospital for monitoring, scans, and daily consultation with a hepatology team.  I got a beautiful single room (Feldberg 887) with a private bath and shower and amazing views of the Muddy River area over the hospital complex. It has below freezing every day and the steam coming from the buildings added an interesting dimension... The liver is a very important organ that does a lot and liver failure can lead to death. They put me on 80 mg of a steroid, prednisone, every morning to try t...