I've been thinking I needed to add some clarity about the obvious enthusiasm and optimism in my last post.  While the tumors and the lung embolism were gone in the last CT scan, it was not all clear sailing and it certainly didn't mean I've heard the last of pancreatic cancer.

Doctor N reminded me, as he read the radiologist report of clear scan results, that what this means is that we were, as hoped, able to delay the recurrence of cancer, and it did not mean we'd cured it.  I believe I was so encouraged by the results that I just did not take that in as deeply as I should have.

So I went and did a little browsing and homework about pancreatic cancer recurrence and found several studies that seemed quite relevant and also a little encouraging to me. One of these studies focused on the question of recurrence and survival based on the time of recurrence (early, i.e. during chemo/radiation, or later) and how that effects survival rate. The others were about the blood marker CA 19-9 and how various levels of that marker seem to effect recurrence.  This is where my issues come in. In our final visit, Dr N pointed out that my CA 19-9 marker had increased from 60 to 120 and that this is not an encouraging sign. What is encouraging is that the studies point out that survival among patients with CA 19-9 levels below 180 is considerably longer than among patients with levels above 180.  It also seems possible that levels can reduce with time following surgery and chemo/radiation treatment. So that is a possibility worth keeping in mind.

So, here are links to those studies for those who might want to dig through the details.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3063904/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326972/
http://jco.ascopubs.org/content/26/36/5918.long

As a general rule, I've found the studies and articles in The Journal Of Clinical Oncology to be very well done and quite readable.

A bit of a jolt happened yesterday when I had to write to the VA to claim a hardship situation regarding my appeal of their decisions on several of my disability claims. By some strange turn of events, I was able to reach somebody in their customer service call center, and by an even stranger turn, this person was able to give me some really useful information.  I had called to make sure they actually had my appeals in their system, as for the second time since April, their computer system showed none had been filed. As we talked, I asked how long the appeal process normally takes and was told that an average simple appeal typically takes 370 days. Good grief!  I commented that I likely would be dead before they got to it and the rep thought I was just kidding. I told her about the pancreatic cancer, and she told me I could write a letter stating a hardship caused by a terminal illness and asking for expeditious handling of the appeal.

So I wrote the letter, pointing out that I likely would not survive 370 days from the date of the appeals.  And strangely,  I kept coming back to it, re-reading it nearly ten times throughout the day. Not entirely sure why this happened, but I suspect it was that I had some kind of tangible evidence or admission of my mortality. It didn't feel good at all. Not real scary, but something of a downer for sure. I guess I'm glad that I'm suffering so badly from the diabetic polyneuropathy and that the constant pain, while bothersome, keeps my attention pointed away from cancer. I hope I'm not minimizing or using the other ailments as a way to avoid dealing with it, but I'll take it whatever the reason.

Keep on keepin' on, reader. Never give up. We never have more than the moment at hand anyway. Best to you.

Namaste

Well, they said in September that it couldn't be done. All three docs. The surgeon said he might not take the tumor because I was a crappy risk for surgery. Each test told him otherwise, and he changed his mind. The oncologist said chemo might not help following surgery because pancreatic cancer is just so dang tough to deal with. The radiation oncologist said much the same, and cautioned that the side effects of radiation might be more than I wanted to handle.

Well. Wrong! Yesterday's CT scan, following surgery and months of chemo and radiation, came up clean. Even the areas that looked questionable on the last scan came up clear. Pulmonary embolism gone. No sight of any tumors. All is not quite perfect, however. There is a marker in a specific blood test that does sometimes point to pancreatic cancer, and it is trending up which is a little worrisome. Yet that can be caused by things other than cancer. However, with nothing on the scan, there is nothing  for them to work on.

So today, chemo doc concluded that we have indeed delayed recurrence and improved quality of life (I'm off pain killers for a week and now wide awake) as was the hope when we began.  Can't yet use the word cured or the word remission. But I don't need those words. I'm happy with the word gone, as in tumors all gone.

 Two unusual things happened yesterday. I was encouraged by a friend to hug the scan machine. So I did. And spoke tenderly to it. After the scan, waiting for the van, a good friend from work who I hadn't seen for more than two years, ambled up to me with her hubby. Hugs and chitchat and then learned he was back for a 3 month re-check.  Originally he had been given 12-18 months and very little hope. Now cancer free nearly two years and lovin' life. This kinda coincidence happens to me often enough to know it means something special. Confident it was a sign from Spirit and I was gonna get a clean bill today with three month re-check.  Sure enough it was. I had worked hard up till the doc walked in, to prepare for the worst news as well. This kind of result just doesn't happen with pancreatic cancer.

I don't know that this experience could apply to anyone else. But I'm convinced that faith and confidence and accepting the fear rather than being overwhelmed by it, and getting the most of each day had a great deal to do with this result. And prayer. A lot lot lot of prayer.

Never give up, people. We only have today and this moment anyway.

Namaste

Has it been a full month?  Apologies to anyone who might be looking here for useful information.

We're now a week past the final Gemcitabine treatment. Finally it feels like it's beginning to clear out of my body. Still the annoying runny nose and weepy eyes, and an awful time getting to sleep, but I now feel more "awake" at times during the day. It's a bit of a surprise because I didn't ever know I was less than fully awake.

So now I've managed to make it through all the chemo and radiation they had in mind for me and am feeling not much the worse for wear.  I did manage to sleep through my CT scan appointment last week, so will have to go do that on Monday. I'm a bit apprehensive about it because the bad news option leaves little option.  But must suck it up and go find out what is or isn't down there.

Was thinking a little while ago that I never did notice any difference from missing my spleen, which they took along with the tumor in early October. Why is that? Does it do nothing other than secrete bile? Is bile necessary for anything, really? Aside from making us bilious from time to time?

So that's all for now. Will post again after I learn the results of the scan next week.

Never give up. Today is all we have anyway.

An uneventful but informative visit with Dr N today.  Today begins my "off week" from Gemcitabine. Because my CBC numbers were dropping significantly, I asked him about it. For starters, he was not the least bit concerned about this change. (More concerned about the 4 lb weight loss) and said it's pretty normal with Gemcitabine. In fact, he explained that this is the very reason they take a week break after three treatments. Three is about all the body can take at one time. He predicted that next week the numbers will be significantly back toward normal.

I've mentioned before that there is another guy with very similar pancreatic cancer on the same treatment regimen, about a month ahead of me. I usually ask how he's getting along and when I asked today, Dr N said he was not looking forward to me asking. It turns out the guy had what was a recurrence on the day of his final treatment.  Not much they can do about it except try to retard the tumor growth and ease his pain and discomfort. Will be trying a different chemo regimen designed for that. At least to begin with. This news was a bit of a reality slap in the face. I suppose I've just been taking advantage of all the energy I have to put into the Diabetes and Peripheral Neuropathy symptoms as an excuse to ignore the mortal reality of the cancer. Gonna have to turn my mind toward that, I suppose. So I asked what most people encounter when recurrence comes along. Of course, everyone is different, but substantial abdominal pain and digestive discomfort are pretty common. I will ask Teacher to spare me that as he sees fit.

That's about it for today. Three more chemo treatments and then the PET scan to see what's new, if anything. Here's hoping there's nothing there.

Namaste. Never give up. Life is here for us to do what we can with it. Bud, on the other hand, is here to make me crazy.

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.

Feels like a bit of a setback somehow, even though the docs tell me that mouth and throat sores are a common effect of 5-FU.  So they disconnected my pump yesterday and doc told me that after three solid weeks, to leave it off for a week should not make much difference in the efficacy of the radiation, which is the only reason to be taking the 5-FU.

Seemed like I could feel the change in my body after only two hours free of those constant infusions. Hard to describe the change, but it mostly seemed like a lightening of some kind. As though the body had been pushing back against the chemical and finally was free of that need to push.

Grateful for the relief, but today the throat and mouth were just as bad. Throw in some nasty explosive bowel movements, and there you have my Saturday.

Except for the Chinese fire drill with what doc calls Magic Mouthwash, with Lydocaine to relieve the pain.  They were to call it in to my local pharmacy yesterday, but when I checked today, the pharmacy hadn't heard from them. So got the doc to call again only to find out the pharmacy didn't have what they needed and would have to wait for a special order on Monday. So I asked them to transfer it to another major pharmacy. No luck. That pharmacy wouldn't try it without knowing which combination of ingredients the doc wanted. So original pharmacy said they would call doc to get the information they needed to transfer it. But they didn't. The pharmacist said that's not what he told his tech to do. About to give up when the on call doc phoned and said it wasn't likely he could find out the desired recipe today and that I should gargle with salt water till Monday when the original doc could call it in. Ready to give up when the original pharmacy called and said that the doc had called them and they did indeed have what they needed to mix the recipe. But that they were going to close in eight minutes. Tough challenge when one can't drive and must depend on neighbors who had left for the day. So we will wait till Monday after all.  Who says our health care system is in need of improvement? No point fussing. Will learn to love salt water.

Never give up and keep smiling through it all.

Made it to the half-way point today, both for the radiation/chemo segment and the overall treatment regimen.  Up until last week I had been looking forward to this point. But the side effects are kicking in and kicking my butt a bit.  Actually wasn't sure I'd make today's treatment because in the middle of the night I considered a cab ride to the ER.  Mouth sores, mild nausea, sore throat to the point of feeling like throat tissue is peeling and there is some obstruction lodged there.

This didn't happen with the Gemcitabine alone, so it's down to the 5FU. Disappointing because they convinced me that this was the less powerful when it comes to side effects.
Will pour down the cough drops and lemon/honey tea and keep my fingers crossed for some sleep tonight.  Just three more weeks of that brand of poison.

One thing that's encouraging is observing the others undergoing radiation as we come together in the waiting room. A most cordial gang of geezers, all very kind and thoughtful. What's encouraging is they never talk about their cancer. They talk about life. That makes for a very healthy perspective for me.

Never give up.

The radiation treatment has become less annoying and in fact, I find myself looking forward to it (it's the people) and miss it on the off days. The annoyance is largely from the time and difficulty involved in getting there, getting done, and getting back home. Wheelchair bound with neuropathy it takes two or three times as long to do anything as it would a mobile person. So from beginning to get ready to getting home takes more than six hours for a fifteen minute treatment. Makes it a challenge to get the rest of life taken care of.

Not sure if it's the 5FU chemo or the radiation but some untoward side effects have finally shown up. Not serious yet, but getting little sores on arms, in mouth and on my head. And there was a week of "flu-like symptoms" this week, just sniffling and sneezing to the extent of some minor nose bleeding. Feeling pretty good today with all that stuff.

The radiation machine broke down Friday and they had to go look in Kazikistan for an engineer to fix it. So six hours to miss an appointment. A wee bit annoying.

Otherwise an uneventful week, save for getting the powerchair stuck in the mud today, near but not near enough to the front door. Had made two trips over the same spot while trying to move some planters and pots up onto the ramp and porch to get ready for herb and flower time.  It took about two hours to get it extricated, but all is well. Although I had confidence in Plans A, B and C for getting free and into the house, I still found myself getting strangely anxious as I waited while the sun dropped down into the time of uncomfortably cool.

But all's well and I'm kinda looking forward to getting another week of treatment under my belt.

Never give up.

Not sure which day this is, but it feels like a turning point, and not necessarily a good one. I began radiation therapy in earnest this week and I've been troubled and anxious about it for weeks. The main problem is that my peripheral neuropathy condition makes it very difficult to get onto the radiation "table".  It takes one tech to lift my legs, while two hold my shoulders to keep me from sliding off the table.  Clearly this facility is not designed with disabled patients in mind. Seems ironic and absurd to me. The people are great, and that helps make up for it. It's as though they know patients are struggling with the facility and the procedures and they have to be on their toes to offset that. Whatever the reason, I'm grateful for that part of it.  Five days per week for twenty eight sessions. Two done, bunches to go.

Today we also began Flouorouracil (5-FU) chemotherapy which is intended to facilitate or enhance the radiation treatment. I'd prepared myself for the weekly chemo treatments, but was surprised to find the doctor decided to use a continuous infusion pump instead of weekly IV infusions. So I have this damn pump in a bag strapped around my neck for six weeks. This is and will continue to be annoying as Hell. I'm so sick of tubes pouring stuff in and draining stuff out. It's like I needn't be here at all, so long as the tubes and pumps are doing their jobs.  They say the side effects with 5-FU are generally less severe than with Gemcitabine, which I tolerated very well. Doc said I'm more likely to suffer side effects from radiation than from the chemo.  Gotta remember he's trying to cure me of this menace when we approached the treatment thinking cure was not a reasonable option.

That's the troubling part of the day.  I asked him what he meant when he said, at the onset of treatment, that he "thought he could do me some good."  His response today was that although the odds are against us, it's not impossible that we will cure this monster. So long as it's not making matters worse, it's therefore worth doing the treatment. He suggested that the secondary objective was to delay recurrence, which is frequent with pancreatic cancer. And suddenly mortality hit me in the face. Because he said that when recurrence occurs, there is essentially no cure and the cancer will kill you. So in that regard, it's a matter of buying time. For what? How can I use this time to benefit those I love?  How can I use the time to experience the fullness of life? Finally coming to encounter the reality of pancreatic cancer. And it's no fun. Could use some ideas here, folks.

Stay tuned. And don't give up. Ever.

Not sure what chemo day this is, but I've finished two three week cycles of Gemcitabine.  I have been blessed with few and mild side effects. Some sniffles and sneezes that typically lasted only an hour.  Usually occurred on the third day after a chemo treatment. Got a little fatigued in the second cycle and I have only the chemo to point toward.

Now in a period of chemo pause while we prepare for the radiation/chemo phase. Great news today is that it's a 28 treatment plan, a full month less than I'd come to expect. Getting up the gumption to go in there every weekday for six weeks is the biggest challenge so far.

I'm blessed to be at this point, as the CT scan done two weeks back showed no new metastatic growths around the pancreas. There was some swelling and a small pulmonary embolism in the lung which we continue to treat with blood thinner injections.

Today we did another scan, this one to map the parts of my body that are to be blasted with the accelerator.  I'm impressed with the docs, but the organization structure for getting to and supporting the treatments gives me pause and pains.

I suppose it's a mixed blessing that I have so many health problems separate from cancer. Leaves very little time to think about the cancer and my prospects.

This below received in an email from Pancreatic Cancer Action Network (PANCAN) today. Keep in mind that PA'NCAN is all about promoting clinical trials and I make no judgment about that one way or another. They do seem to do pretty good and useful work.

**Important Clinical Trial News**

Last November, we shared that Celgene Corporation (Celgene) released positive news relating to its pivotal clinical trial in the treatment of pancreatic cancer. Celgene conducted a phase III clinical trial with the intent to show that the combination of its chemotherapy drug ABRAXANE® with gemcitabine would improve overall survival in patients with untreated, metastatic pancreatic adenocarcinoma when compared with gemcitabine alone. Use of gemcitabine alone has been the standard of care for pancreatic cancer.

The supporting data was released today by Celgene, showing that overall survival increased by nearly two months (8.5 vs. 6.7) in patients who received the combination treatment. A
59 percent increase in one-year survival was also reported. This information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. On average, patients treated with gemcitabine and ABRAXANE did experience more side effects than patients treated with gemcitabine alone, though the combination was still well-tolerated.

The complete findings of this study will be presented at the Gastrointestinal Cancers Symposium in San Francisco later this week. Celgene will then take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. ABRAXANE is already approved to treat breast cancer and non-small cell lung cancer. Before FDA approval of ABRAXANE for use in pancreatic cancer, physicians may prescribe ABRAXANE if they feel it is the patient’s best option.

These positive results indicate another step forward in the treatment of this disease. This success also illustrates that clinical trials can give patients access to state-of-the art treatments that may be their best option. Overall, patients who participated in this trial experienced more time with their families and loved ones. Treatment progress for pancreatic cancer will only be achieved through the clinical trials process. Further, this positive news brings us one step closer to the Pancreatic Cancer Action Network’s goal of doubling pancreatic cancer survival by 2020.

If you or a loved one is facing pancreatic cancer, we recommend that you consider clinical trials as a treatment option every time you discuss your treatment plans. At the Pancreatic Cancer Action Network we maintain the most comprehensive database of pancreatic cancer-specific clinical trials in the country, and we are staffed to help patients understand access and eligibility for these trials. If you have questions about this important news, please call our Patient and Liaison Services (PALS) program at 877-272-6226, Monday through Friday from
7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.

Sincerely,

Julie Fleshman, JD, MBA President and CEO