So it's been a full month.  Nothing to be discouraged about, and something new today to feel a little encouragement about.

Dr N gave me a three week break following completion of the radiation/5-FU therapy. Had planned for two weeks, but the side effects during the first week off were intense enough to cause him to wait another week to clear that stuff out of my system before starting back to Gemcitabine.

Somewhere I read that the first week following daily radiation/5-FU therapy can involve side effects equal or greater than those during the treatment. That did happen with me. The side effects were more annoying than debilitating, but Dr N  wanted to make sure that stuff was cleared out completely before beginning the next phase so as not to reduce the effectiveness of the Gemcitabine.

The side effects of radiation/5-FU for me were mucositis including inflammation and some blisters from the lips all the way to the stomach. This pretty much killed my appetite, although I could still get hungry from time to time. Continued losing weight through this period and didn't put a stop to that until last week, when I finally gained two pounds, having forced myself to eat half a rhubarb pie with frozen yogurt. Ugh.  Had minor nausea throughout, mostly limited to times when taking medication or eating. I'm sure it was a consequence of the mucositis.

So about a week after stopping the radiation/5-FU therapy, the body began to get back to normal and I started back on Gemcitabine two weeks ago. Was a little concerned that the side effects might be a bit more severe following the experience with radiation/5-FU, but it turns out they have been almost identical to the first two months on the stuff.

One of the fun things that has happened during this period is the way Dr N always asks if I've experienced any abdominal pain during the previous weeks. My answer is and always has been "no", and each time it seems his smile gets a little more broad and the surprise in his voice seems a little more emphatic each time.

The first encouraging thing is one I likely manufactured in my mind, but it was there nonetheless, so I'll take it. After the 30 day followup with the radiation oncologist he said he would schedule me for a six month followup visit. Later that day I realized I had not considered or planned on anything six months out in the past year and it brought a nice warm smile, even knowing it might not be at all relevant.

Now for the (potentially) good news. I asked Dr N to see if he could find an alternative anti-coagulant to the enoxaparin because my medical pharmacy benefit had changed and my co-pay went from $5 to $380 monthly for this subcutaneous monster. Today I got a call from the group pharmacy letting me know that my new prescription for Xarelto (Rivaroxaban) was ready and it should arrive in a few days. This, of course, is for the pulmonary embolism they found in October and apparently is one of the few anti-coagulants that is effective with pancreatic cancer.  Don't know much about it except for the few Internet references I've found, but those look very encouraging. My belly will be happy to be done with the bruising and bleeding from that twice daily injection.

That's all for now. Still here. Still kicking. Still hurting. Still smiling. And still looking forward to tomorrow.

Namaste. Never give up.

A milestone that feels like a millstone.  Yesterday I finished the six week radiation/chemo component of the treatment plan. Got my certificate of achievement and got to ring the "graduation bell", ding dong day.  Actually, it was quite a treat. Got a standing O from all the patients and staff assembled in the reception area, and sweet hugs from most all the staff.  As uncomfortable as this treatment process is, I will miss the people involved. So very impressed with their dedication and humanity. These people at the Chattanooga Memorial Cancer Institute know cancer and know cancer patients. And they treat them and us wonderfully. I feel most fortunate in this regard.  I've made a few nice friends among the patients I saw daily and always worry some when I don't see them. Some of these folks have had a much rougher time of it than I.

Before they disconnected my 5-FU pump, doc told me what to expect in the coming weeks. Almost wish he hadn't told me to expect that the side effects can get worse before they get better. Sure enough, he was right.

So in the end, the inventory of side effects feature a bit of nausea and significant mucositis, leaving tenderness and sores from my lips to my stomach. Indeed, it is a little worse today but I'm sure it's gonna turn in another day or two. Those and the low level fatigue are about it for the side effects in this treatment segment. I am looking forward to the two week break and the six week weekly Gemcitabine infusions. Found very little discomfort with that in the beginning six weeks.

A trickier matter is what to think and do about the answer Dr. N gave me to my question about what he would expect my future to be given his experience with other patients with similar conditions, with this treatment regimen, and with my response so far.  He agreed that finding only one cancerous lymph node among the nineteen they removed could be a  good sign, suggesting they might have gotten most all of it with surgery. However, the fact that they'd found some in the fatty tissues on the margins argues in the opposite direction. So, while he hopes we may have a cure, the history of pancreatic cancer suggests otherwise.

So his guess was that we may well have delayed the recurrence following surgery. That some have survival rates of 18 - 24 months, and a few survive about 36 months. Without the chemo and radiation, many survive 12 months or less. There is no telling if or where I might fit into that picture. One effort to find comfort in that finds me concluding that given my family history, I'd be very lucky to survive 36 more months for any reason, including "old age".  Actually, I've always believed that for me, anything beyond 56 years would be gravy, and thus I've had quite a lot of gravy, for which I'm grateful.

So there remains the thinking and deciding what to do with the rest of this time. I really have only a few powerful beginning ideas, and realize it would take a pretty big chunk of time to even get moving on them.  But whichever path we choose, enjoying the present moment and day will be the feature part of the plan.

Never give up.  Namaste.

Heading into the home stretch of the 5-FU/radiation treatment regime. Four sessions remain of the planned 28.  Chemo doc removed the 5-FU pump for the weekend, largely due to nasty mucositis,  and radiation team gave me Monday off so both can end on Friday. Saturday was not too bad in that I got outdoors for a while and could mostly ignore the discomfort. But it's significantly worse today, and that's surprising as I expected it to go the other way. Ah,well... just five calendar days left for that regimen and then after a break it will be two three-week programs of Gemcitabine IV therapy. I tolerated that very well the first time and hope to have the same experience.

Overall, today is kinda miserable. All food except scrambled eggs looks and tastes bad. Can't chew and teeth remain in glass on sink. As of yesterday, had lost exactly 80 lbs since the diagnosis was made. Be happy to stop after 40 more and chemo doc says that plan should be ok.

So as crappy as it feels, I am determined to make the best of this deal and be grateful that I'm so close to the end of radiation.

As for you, survivor, I hope you are well. Better days may well be ahead.

Keep on truckin' and never give up.

So much for looking forward to radiation treatments. They're starting to take a bit of a toll and that will no doubt increase as we go for the next two weeks.  The only problem I'm sure is related to radiation is the diarrhea. It was bound to happen as I can't imagine how they could get a beam in there without damaging some of the surrounding organs and tissue. The pancreas is, after all, surrounded by other organs and the beam has to go through them to get to the target. Still and all, I have great faith in the oncology radiation doc and the techs. They are extremely careful to get me positioned properly and watch closely as the beam travels across my abdomen.  Chemo doc prescribed a med for the blasts and it appears to be working for now.

The 5-FU has begun to have adverse effects again. After they had the pump disconnected for a week, my mouth and throat finally healed and were good as new. That's encouraging to think about how quickly they will heal once we're done with this stuff in two weeks. The effect is common, and I believe is called mucositis, and it inflames the skin of the throat and mouth to the point where I don't really want to eat anything. It could also be caused by radiation in that local area. Guzzling the protein shakes now and then works somewhat. But the stuff I can eat with this problem (dairy mostly, scrambled eggs and hot cereal) tend to aggravate the other problem.  There is a deal called Magic Mouthwash that helps some in that the Lydocaine in it numbs the mouth and throat for a couple hours at a time.

Please don't take this as complaining. I'm not. Just passing on the information about this experience so that anyone looking here for information will get what's real.

There is a new release about how Doxepin relieves some Mucositis pain.  Here...

http://www.clinicaloncology.com/ViewArticle.aspx?d=Solid%2BTumors&d_id=148&i=February+2013&i_id=932&a_id=22583

All for now. In two weeks I get to ring that damn bell. Never give up. You are a survivor.