I have had two decent nights sleep, with mild back pain (likely esophageal in origin) and without much regurgitation. This morning, I could down a bottle of Boost+ in about 15 minutes. Yesterday, it took much longer. My weight is down to 147 lbs. I was at about 180 when I first discovered my tumor 20 months ago.
On the bright side, people are telling me I look good.
I have stopped taking the Hydrocodone-Homatropine cough syrup, without withdrawal symptoms. In fact, with no solid food going down, my colon has been surprisingly active. Although the 20 mg generic Prilosec tablet is tiny, I have not taken it yet today, fearing it is enough to block my esophagus. I am looking into finding the liquid form.
I think there is slow improvement, and I might be able to start eating food again, perhaps after more dilatations.
I will follow up with Dr. Lewis.
Taking a step back, I think I need to see Dr. Flam, to get his input. It is probably important to get a repeat CT scan to make sure I do not have a recurrent tumor around my esophagus or elsewhere. Will I need a PEG tube? (Percutaneous Gastrostomy) for feeding? Sometimes, radiation strictures require multiple dilatations, up to 6 before there is relief of symptoms. Sometimes there is no relief. The latest treatment is biodegradable stents. These have been tried in Europe with good success. There is a product on the market in Europe called the SX Ella BD Biodegradable stent, by UK Medical. I have emailed the company, but I don't think the stent is FDA approved. Another study is being done led by Dr. Alessandro Repici in Italy, a multi-country trial. I emailed Dr. Repici and he responded today. The stent is in clinical trials and will not be available in the USA for 2 years. These stents are placed across the stricture and hold it open for 6-10 weeks before degrading and being absorbed by the body. Most patients get long term relief, but many need restenting. There are few complications.
In the meanwhile, I hope to go to the Bridge Club tomorrow and to work Tuesday morning at Kaiser.
Go 49ers
Working through all of this discomfort? You are one amazing person and I admire your gutsyness. Seems like you'll need more nutrition than you're getting. Tried eating pizza today, but mouth still too sore 4 months out. Love the title borrowed from Johnny Cash song. s/georgemurraymerkel@gmail.com
ReplyDeleteNot a good day for the 49ers.
ReplyDeleteI credit the song lyric to Kris Kristofferson