Letter updating my Endo Dec 2010
Medical Update – December
I wanted to update you on how things have been going before I see you on the 22nd. As we discussed, I skipped my Prednisone treatment on Oct 22. My next treatment would normally have been on Nov 19, but I postponed it until Nov 24 to allow more recovery time if I had a bad reaction. As you know, I started feeling sick two days after the treatments on:
- August 27 (lasted about a week)
- September 24 (lasted about two weeks; never fully regained energy)
Before the Nov 24 treatment, my right side was slightly numb but walking and breathing were fine. I responded well—better than early treatments. My numbness went away, my pulse peaked around 100, and I managed 4–5 hours of sleep instead of the usual 1–2. On Nov 26 I slept most of the day, but instead of numbness on the right, my left arm, leg, and face were numb.
On Nov 29, while at work, I developed severe nausea, breathing difficulty (likely from the nausea), brain fog, and numbness on both sides (left worse). My arm was weak and face drooping. Symptoms eased by evening. Similar events occurred on Nov 30, along with right-leg drag and neck pain on the left. These issues faded over several days.
My energy is still low and I need daily naps. My lips are dry, peeling, and bleeding—signs my facial muscles aren’t working normally. My left arm and leg remain numb.
On Nov 17, I had an endoscopy for the PET scan hot spot in my distal esophagus. They found erosion, but biopsies were clean. It’s not conclusive; the lesion may have been missed.
Questions
- In your last email, you mentioned speaking to my old neurologist—any update?
- Have you found a neurologist experienced in my condition or high-dose prednisone treatment?
- Since I don’t have adrenal insufficiency but still react badly, is there anything else we should investigate?
Treatment Update
On Dec 15, I began my next series of treatments. After 1000mg, walking improved slightly, but my right side remained somewhat numb. My pulse and BP dropped during infusion. Two more infusions are scheduled this week.
Long-Term Outlook
For five years, illness—mine and my late wife’s—has defined my life. I’ve gone from test to test without direction. Last year, I didn’t expect to see Christmas. My wife passed 3.5 years ago, and I’ve stayed alone, unwilling to bring someone into such uncertainty.
The total body scan shows no iodine-avid cancer, but the PET scan still shows two hot spots. It appears my cancer now metabolizes sugar; per MD Anderson, that implies about a 3-year expectancy. Dr. Lester believes I may live five.
Radiation has left me with frequent, severe headaches. My neurological issues are worsening—I tire easily, need supportive shoes, experience facial muscle weakness, and the treatments help less. I stutter and struggle with word finding.
I know you don’t have a crystal ball, but I’d appreciate your insight:
- Should I still plan for retirement?
- Will I need another PET scan or surgery next year?
- What should I tell someone who asks how I’m doing—or whether they should care about me?
- Is the goal now to manage, not cure, the cancer?
- Will the neurological problems keep progressing?
Thank you for your time and care.
Odell
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