NET Cancer Day was November 10th. I'm a bit late in posting anything about it and feel somewhat remiss...
We had some great news coverage on Nov. 10th! All due to the hard work of a fellow carcinoid cancer patient (or 3).
A year or so ago, we learned that Coach Dave Rose of the BYU (Brigham Young University) men's basketball team was diagnosed with pancreatic neuroendocrine cancer. One of our support group members knows him and said he would talk to him and see if he could help us get our Governor to declare Nov. 10th as NET Cancer Day in Utah.
Through his efforts and the efforts of another member of our support group, Governor Gary Herbert signed the declaration for Nov. 10th to be recognized as NET Cancer Day in Utah. We were very excited as last year, he didn't sign the declaration. Sometimes it takes someone "famous" to call attention to a "cause". Below is the link to the interview with Coach Rose. They also interviewed Merlynn, our group leader. Merlynn and his wife Laurie, know the reporter who came and did the interview. It's a start on the road to getting more recognition and awareness out there.
Coach Dave Rose has P-NET
On a personal note, I haven't blogged much because there just isn't much to say... this blog was always about my "cancer" journey and not my personal day-to-day life, although I know that they are definitely intertwined in every way.
I don't have any blood work scheduled until January. I meet with my oncologist in February and depending on my tumor markers, I won't have a scan. I am not sure how I feel about this. It'll be one year in Feb. since I've had a CT scan. My oncologist feels that it is better to wait if my markers remain the same (normal). It'll be better to compare scans done further apart to see if there is progression. Meaning, it'll be easier to see if there is any progression or not. I get where he's coming from but I'd also like the peace of mind that a scan showing stable disease brings. I also want to know if things are progressing in any way. I know he is mainly concerned with my liver tumors. I also want to make sure nothing else "pops" up outside the liver. My lymphnode involvement was pretty heavy according to my original pathology report. This means the cancer could spread just about anywhere.
A fellow NET cancer patient, who I only know through Facebook, has just been diagnosed with 11 tumors in her brain. This can and does happen. I hear many patients say that their oncologist tell them that this type of cancer doesn't spread to the brain. This is just not true. I asked her if it was found on a routine scan or if she was having symptoms. She said she just didn't feel like "herself" and since it was time for her routine scans, she asked for a more extensive scan and this was how the tumors were found. She is getting radiation to the 3 bigger tumors and the rest are quite small so they will watch those. I hope the radiation works and kills those tumors.
I've been feeling pretty good. Fatigue comes and goes. Some discomfort around my scar from my liver surgery and some cramping/pain in my abdomen. I also started having hot flashes--I think that's what they are. It could be flushing but I don't turn red. I don't really sweat much -- just a little around my hair line and hot flashes are usually "wet" whereas carcinoid flushing is "dry". I figured if they stopped after my Sandostatin shot then it may be flushing but they didn't. I had my shot last week and they've continued at the same frequency so I'm pretty sure that they are hot flashes and not carcinoid flushing. Both suck.
