Esophageal Cancer Support Group

Hi Fred. Thanks for checking on me. I had one set of tests after 8 weeks of chemo. There was no spread and the cancer had shrunk marginally. Too early to tell if any other action can be taken. My next CT scan is Aug 6 to see if there is continued response to the chemo. Side affects to the chemo have been tolerable (thinning hair, brittle finger/toe nails, pain sensative fingers & toes, nausea, cramps). Been staying pretty active. How are you?

Hi Dan:

Glad the side-effects are managable. Hope your CT scan is also good.

My blood cancer markers rose some, as they have done several times in the past. Had an early colonoscopy, which was fine. We'll see on the next blood work up.

Thanks.

All the best,

Fred

Dan - sorry you are having the side effects of the chemo but glad to hear the cancer hasn't spread.

Keeping you and everyone else in my prayers.

Cheers Annie

PS: Hi Fred !!!!

Great to see you both posting & glad you have each other to bounce things off too. Dan, that's great that the cancer shrunk and didn't spread. Also, glad that side affects have been manageable. Fred, I already told u how glad I was that your colonoscopy was over and everything was fine!

I've been wondering about Patrick. I know someone asked you about him a month or so ago. Never see him around anymore - have you heard anything? I contacted Deborah, too. She was the one that did the Proton therapy instead of radiation & surgery. Haven't heard back from her, but am hoping she's still doing well.

Hang in there! I pray every night for remission/cure of EC recurrence and EC.

Hi Brenda:

I could not find anything suggesting Patrick had or had not passed on. I'm thinking long term or hospice care, but I really don't know.

I will continue to ask about him.

All the best,

Fred

Glad everyone is still fighting and kicking. wish i could see you all in person for a group hug. I too have been thinking of patrick and deborah. Prayers to all Cindy

Fred and Dan
I have joined you in your fights. Fred is already aware that after my 1st post op scan my EC (which was supposed to be gone) shows up on my liver. I have just started the chemo to deal with it. It sounds like the same treatment you have been on, Dan.

Thank you both for posting. When I found out the EC had moved to a new address, I was emotionally ready to throw in the towel. But posts like Fred's and yours have encouraged me. So it is on with the boxing gloves and getting ready for round two.

Love the boat, Dan. I live on the Potomac/Chesapeake bay and love the water.

John

Dan,

Just curious about your progress. Love to hear from you!!!!

All the best,

Fred

Fred & Brenda (from a separate private message) ... thanks again for checking on me. Brenda, I'll respond to both yours and Fred's notes here. Hopefully that's OK.

I actually just got back from MD Anderson in Houston a couple hours ago. I had blood work and a CT Scan at 8:00 PM last night, and a PET Scan at 6:30 AM this morning (we've been trailer camping in COOL Colorado for the past two weeks). Quite a change in temperature from 70's to 100+'s.

The results were not as good as I hoped, but not bad and not unexpected. The preliminary report shows the cancer has shrunk again, but only marginally (I was hoping for significant shrinkage). It did not light up the PET Scan which supposedly means it is not very active. The VERY good news is that there has been no detectable spread and no new cancer sites.

The chemo toxicity has been building and side effects lasting longer. I am losing toe nails and finger nails, and have significant intolerance to cold along with neuropothy. I've lost most of my very thick hair (I finally buzz cut it). However, I still remain active and have managed to water ski, fish, sail, kayak and travel (44 nights of trailer camping and counting -- plus a cabin trip to Yellowstone with the kids and grandkids).

The MD Anderson esophageal cancer board met right after my oncologist appointment today and she presented my case again. She called me to update me while I was on my drive back home and they have decided to halt chemo and evaluate again for proton therapy radiation and/or surgery. I told my oncologist to make sure the surgeons on the board new that I considered my current chemo treatments to be an increasingly unacceptable quality of life, and that I was willing to take significant risk if surgery holds the possiblity of removing the cancer. I assume that message had some effect on their decision today.

They are to schedule a meeting with me sometime next week to discuss both surgery and radiation considerations. This is what I wanted, so stay tuned (probably more than you wanted to hear). My attitude is good and my determination is strong -- just ready to make a more direct and drastic approach to try to beat this thing.

Dan:

Your attitude and candor are, not surprisingly, both remarkable. I hope the docs come thru for you.

Let us know, if possible.

All the best,

Fred