My Introduction

Hi all,

I’ve been remiss in not posting for a while… I apologize for that.

I decided to go with the IMRT radiation vs Proton Beam for various reasons.

I started IMRT along with daily chemo (oral Capecitabine aka Xeloda aka 5-FU) at the Mayo Clinic in Rochester back on 6/9/15. The plan is for me to complete 28 doses of radiation which should put me out to mid July before being all done. I was very direct with my radiation oncologist and asked her to confirm that this was a curative plan, not palliative. She assured me that it is. In fact, there’s nothing to be seen on scans nor any symptoms to be treating, so it’s definitely not palliative, she said to me.

I struggled with nausea the first week until I got down a routine of taking the right antiemetics that work for me. It’s better now. I do find that I’m ready for a daily nap mid-day and my appetite is lacking.

I’m staying at the American Cancer Society’s Hope Lodge here in Rochester and it’s an easy 2 block walk to where I receive treatment, at least in June and July!

Most of the people here at the Hope Lodge are “in” for prostate cancer treatment. When I explain what I have and have done/am doing they all seem a bit shocked. Don’t get me wrong, there are some here with brain tumors and other things even worse than CCA, but nobody here has heard of it before either, sadly.

I drove the 1,200+ miles from Richmond, VA to Rochester, MN so that I’d have a car since I’m here for so long. I have to grocery shop and cook for myself while here so transportation is a must.

I’m growing tired of “treatment”, if you know what I mean. Quality of life the past 6 months has been lacking. First it was chemo, then surgery, now radiation plus chemo. The original gem/cis chemo worked so well on me that they are recommending that I do it again after the IMRT for “a good 5 rounds”. That would put me well into 2016… I’m NOT looking forward to that… My deepest fear is that I’m doing all this for naught and no matter what, the cancer will return, and I will have wasted 6-12 months of feeling good and enjoying life. I’m sure we all fear that to some degree.

If you at Mayo before the end of July, give me a shout!

-Matt

Hello everyone,

I’m back home, recovering from surgery on 5/7/15 at Mayo Clinic in Rochester, MN.

Once again my surgeon was David Nagorney.

The plan was to go into my abdomen laparoscopically and look around to confirm there were no signs of metastasis that may have not shown on CT/MRI imaging. If all looked good, Dr. Nagorney would reopen my peritoneal cavity, on the same incision as my resection in Jan 2014, and assess and attempt to remove any remnants of the ~1.5cm tumor that was originally spotted in an MRI scan in Jan 2015 and was gone according to imaging after 5 infusions of gem/cis.

The outcome was a mixture of news. On the bright side, there was no sign of metastasis and Dr. Nagorney was willing/able to open me up, reusing about 2/3 of the incision that was used for my resection, to look for remnants of the small tumor and remove if possible. On the not so bright side, the tumor is too close to a portal vein that feeds the portion of my bowel where my bile duct was reconnected during my original resection. The bile duct is apparently too fragile to try to reroute again without long term complications.

Surgery was on Thursday morning and I was discharged on Sunday morning. I flew home to VA the next day.

About a week into my recovery at home things were progressing nicely until one morning I took a shower and rubbed off a bit of scab on my incision and it started oozing, rather quickly, a bloody pink fluid, similar in look to what was collecting in the surgical drain post-op. I could largely stop the flow with a few layers of tissue and pressure but ended up going to the ER for the day where they did a CT scan and determined that it would be best to open the incision, drain and clean the wound, and let me proceed to pack it daily until healed. Overall, I guess that was good news. No leak in my peritoneal cavity, no infection in there either, just a localized collection of fluid and slight infection. I had similar issues with the first resection surgery when I ended up with two major wounds to pack for a few months.

The tumor remains in place while I recover from surgery and consider some options.

I’m considering IMRT (intensity modulated radiation therapy) at Mayo Clinic in MN, consulting with MD Anderson on Proton Beam Therapy, and longer-term looking at an immunotherapy clinical trial targeted at one of the mutations identified in my FoundationOne report.

I’ll be at Mayo again for IMRT related consulting, scans, and simulation work, 5/26-5/27/15 (next week).

-Matt