Saw the Oncologist at KU Med Center. Going in Jenny and I both thought we were going to finalize plans for our 6-week regimen that Dr. Tsue talked to us about. At least that's what we thought Dr. Tsue talked to us about.
We were, instead, presented with three options for treatment.
Option 1: A 6-week regimen of combined Chemotherapy and Radiation -- Chemoradiation Therapy. Five days a week for six weeks. Feel like Hell for most of the treatment time and for a while afterward but it's "only" six weeks.
Option 2: Participate in a Clinical Trial sponsored by the University of Chicago. The "Decide" Clinical Trial that looks at the potential benefits of a 6-week treatment with Chemotherapy alone before starting Chemoradiation Therapy. If I participated I would randomly be placed into a group that did or a group that did not use the 6-week Chemo treatment. i don't pick, the doctor doesn't pick, it's random. Another difference, the Chemoradiation portion of the treatment -- either way -- is administered differently. Different chemo drugs and the treatment is administered in alternating weeks over a 10-week period rather than every week for 6-weeks like Option 1. So this treatment is 10-weeks or 16-weeks depending on which group I'd get assigned to. So it takes a lot longer but patients tend to be not quite as sick with the 10-week Chemoradiation approach.
Option 3: Don't participate in the clinical trial BUT run the 10-week Chemoradiation treatment like I would have gotten in the study, I just get to pick. Again, most people tolerate it a little better but it's an extra month of time.
It sounds like we just need to decide, right? But, of course, it's not that easy. We got home and discovered we had heard a couple of key things differently and that some of the written information we came home with doesn't jive with what we both thought we heard.
So, we have questions to get answered before we can make any decisions.
We do continue to fill up our calendars with more and more appointments.
Good news, we have an appointment Friday morning with another Oncologist. A collegue of Jenny's dad when he was in practice here and he's agreed to meet with us to review the plan to see if it makes sense. A second opinion. Mostly just someone who's knowledgable who can tell us if we're way off base. I don't expect it but this is too important. I'll quit pursuing a second opinion from MD Anderson or Omaha now.
Next week on Tuesday I have a follow-up with today's Oncologist, on Wednesday I have a "swallow test" to set a baseline on what my swallowing capabilities are and, on Thursday, I get my Port and my PEG Tube put in. The Port is basically a semi-permanent I.V. and the PEG Tube is a feeding tube so I can suppliment whatever nutrition I'm able to get down with a sore, swollen throat. We think this translates to an overnight stay at the Hospital Thursday night but that's another question.
So, we're flying forward toward the beginning of some treatment, just not sure what that treatment will be. Geez, this was a long one. Sorry.
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3 comments:
Cliff:
I know what it's like to have multiple options, opinions, and disparate information. And family/friends will try to give lots of other (un)helpful information which you will take with a grain of salt or disregard. So, my advice is: forget about helping humanity by being a part of a study!! It won't help your odds to be the recipient of a placebo. Do whatever will give you the fastest, best chance of treatment based on the best decision you can make after balancing all the conflicting recommendations. No matter which course you go, accept that there will be unknowns and doubts, but have confidence you made the best choice you could with the information you had at the time; then press full steam ahead.
In my case, I found it helpful to have a formal second opinion. Didn't learn much new, but confirmed some things the first hospital said, which made me feel better. Also, from the second opinion, I chose a more aggressive course of action that the first place wasn't pushing as hard. Only after the surgery could we confirm that that was the correct choice.
Hang in there -- it's a long process. While it's a serious time of your life, don't forget to relax and do some normal things.
Appreciate your updates -
Peter J
Dear Cliff and Jenny,
This blog is an excellent idea for you but also for your family and friends.
A couple years ago a good high school friend of mine was in M.D. Anderson for several weeks/months of treatment his son set up a blog. Both he and his wife said the contact, comments and prayers were so meaningful to them.
We have you and your family in our prayers and thoughts constantly.
Sue and Bob
Cliff and Jen,
Thank you so much for including us in this blog. I have really been struggling with "bothering" you for an update. We are here for you ... let us know if there is anything you need.
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