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.

Day 18. Another largely uneventful few days.  These little side effect bouts are a little annoying at worst. Thought I'd add today because we changed the treatment schedule and wanted to see if  delaying today's treatment four days had some kind of effect. I believe it did. But not much. I'm getting the sense that the chemo dosage is carefully planned to last the duration of the time between treatments. I know the mind has an awful lot to do with this as well, at least in my history it does. Originally supposed to get treatment #3 on Day 14.  I'm sure that I felt the side effect sniffles and cough clear up more and more Monday through Wednesday.  Sure enough, my body seemed to have little or no chemical left today, and my blood work seemed to suggest that was true, with the white cell count climbing back above average into it's usual spot.  So today I began with sniffles and chills even before the treatment was finished. That should last a few more hours at most. (Sure enough. They've disappeared even before I've finished this.) Next week is my "week off" so I'll be off the juice for about 14 days. Still must go for blood work, but no time in the snack chair.

For some reason, today as Brenda opened the IV line, I could "feel" that juice running off to kill some bad cells. Now, I know it could not work that fast, but the thought was more than b.s. as I've experienced such images a number of times as or just before they came about. We'll see.

The Treatment Room nurses are a breed apart. With four nurses covering up to 28 patients with each at a different place in their treatment sequence, these ladies never ever stop running.  Literally.  Always a smile and a gentle word or laugh for us, no matter what they're grappling with.  And they have the eyes of a hawk and are about as fast on the move. Today, Brenda asked me how the anti-nausea med was working at home and I told her the only nausea bouts were unexpected and brought on by coughing. About ten minutes later I sneezed and she jumped from the station across the room to see if I was going to cough and need the bag. Nope, just smiled instead. I think if we scratch our nose in there, we will have a nurse on it checking for side effects.

Thank you all.

Day 9

A pretty strange day today. Began by waking in my recliner to find home health nurse changing a bandage on my IV.  Seemed to suggest the day was pointed downward, but it turned somehow.  Highlights include getting some overdue chores done while working with housekeeper, Tami. Favorite was driving Larry IV (power chair) out the yard to the storage shed and maneuvering it through the wet grass and mud to where I had stored the remnants of RoD. (Ramp of Death). The point? Retrieve a piece of 2X4 lumber to make bed elevator blocks. Found a saw in the shed and even managed to saw the block in half without shredding my hands. Why share? Because elevating my legs in bed this way will keep my lymph edema down, and get my fat butt out of the recliner every night. Just a shred of normalcy at a time when they are few and far between.

Next was a new person coming to help me get a bath. I always get a little anxious about hanging it all out in front of someone I've never met, but I'm learning to live with that. It was a great sponge bath at a time when I must be very careful about skin-borne infections as well as all the others. And it feels great to be clean.

The trip to my long time primary care doc was perhaps the highlight, though I barely made it in and out of the car both coming and going.. He agreed to send a letter supporting my disability claim to the VA based on the draft I left him. This is no small favor, as he needs to edit it, have it processed, copies made and mailed. Better yet, he completed a lab order for the chemo clinic doc asking for three tests and a couple preventive injections they apparently hadn't thought of.

But the real kicker with Dr. O. was him sharing his opinion about my diabetic peripheral neuropathy compared to the obvious nerve damage in the lumbar spine caused by several pretty serious disc problems. His point was that he has never seen neuropathy so serious as to cause the kinds of mobility problems (can't walk a step without a walker) and loss of use of all organs in the lower unit.  Of course, this is not good news for several reasons, the worst of which is that we have to go back to square one with the diagnostics to figure our what if anything can be done to relieve those problems. I suppose it could also call my VA disability claim into some question, although he makes the point that both neuropathy and spinal damage are obviously involved. He just doesn't know how much damage to attribute to each.

What does all this have to do with pancreatic cancer? We the point of taking the time to share it is that I'm learning daily life must go on with cancer and we do have other things to think about and deal with. That's not to minimize the importance and terror of the cancer. But to say that if we dig into life, we can work with it and find a few smiles here and there.

Best to all.

Day 8 - Nov 26, 2012

Today seemed like a whole lot of drama or excitement or flurry of hustle over the act of dripping two very small bags of medication.  Could easily have done this at home and saved all the drama. But it wasn't ALL bad. So, here's the short version.

Because I had a 4 AM departure via taxi, I just avoided going to sleep by doing overdue chores, and got there a little early. Very large hospitals, when empty, seem somehow less than lifeless. The reason for the early shine is that I was having a "PortaCath" device implanted under my collarbone in a day surgery. Easy enough for someone with no attachments, but my catheter bag (cleverly disguised by Wal*Mart bag) wants to flop and tangle and pull itself out when I move from chair to bed to gurney. And if they leave you on the bed to dress, with no wheelchair within reach, well...... Just about every move takes 4 times longer than normal and often some creativity in using "Stick", my cane and constant companion.  Imagine using a cane to put on a sock. Happens all the time here.

The procedure was apparently simple and quick. I awoke elsewhere, grateful for the sleep. The Porta Cath was implanted to facilitate chemo drips, blood draws, etc. I am a notoriously horrid stick for blood draws and IVs with many bruises to prove the point. They dance and scream and run around when they see a needle. So this dzugyi can be accessed any time by most anyone with a needle. A small reservoir under the bone but protruding at the surface, with an attached tube running into a large vein just above the heart. Perfect for mainlining. So after 12 hours, the small (1.5") incision hurts and stings a little, but that should be gone within a day or two.. I will be sooooo glad to get rid of these IV lines and their daily flushing ritual. Another half hour to an hour I really don't have to spare. But onward.

I used Kabat-Zinn's mindfulness meditation several times during this adventure. Mostly, when I found my neck and shoulder muscles tensed to the point they could not be relaxed by pulling or kneading. Tension gone in less than a minute. Needed three tries to make it gone altogether. What nice relief.

The chemo treatment room was SRO today. Literally, there were people standing around waiting for one of the thirty treatment chairs to be open. All very friendly. I now I soon saw why. Lunch!!!!  A daily ritual, somebody brings in boxes of a hundred or so sandwiches, a box of chips and crackers, a box of Little Debbie snack desserts and a box of drinks. It takes five kids to make the rounds in a line, several times and be sure everyone, patient and staff, does not leave hungry.  You can argue the ethics of passing out less than healthy food, but you cannot argue that it gets people to their appointments on time. Same doses as last time. Small bag of anti-nausea liquid, medium bag of Gemcitabine, less than an hour with the pump running.

Then, Ben, my occasional volunteer driver, brought me home to Bud, who started doing backflips for treats and demanded to go out to play "Let's Be Idiots".  Great fun, actually.

And there it is. If you are approaching a chemo regimen. My only advice at this point is ask and read. Best bet, by far is your physician, like it or not. The information could mean the difference in your treatment results. Best of luck to you.

b.

 Abraxane clinical trial results

The Pancreatic Cancer Action Network is pleased to share the positive results of a pivotal clinical trial in the treatment of pancreatic cancer that were announced today by Celgene Corporation (Celgene). 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. Treatment with gemcitabine alone has been the standard of care for pancreatic cancer. 

In the study, ABRAXANE in combination with gemcitabine demonstrated a statistically significant improvement in overall survival compared to gemcitabine alone. The complete overall survival statistics are not yet available. However, this information suggests that ABRAXANE plus gemcitabine is a safe and effective treatment option for patients with untreated metastatic pancreatic adenocarcinoma. When Celgene releases the full data in support of this trial, we will communicate it to you.

ABRAXANE was approved for breast cancer in 2005 and last month was approved for a type of lung cancer. It is a form of the chemotherapy drug paclitaxel that is modified by the addition of a human protein called albumin. 

After the full data is released, Celgene will take this data to the U.S. Food and Drug Administration (FDA) for approval in pancreatic cancer. Until this time, because ABRAXANE is currently approved for the treatment of other cancers, physicians may choose to prescribe it for a pancreatic cancer patient if they feel it is the patient’s best option. 

More hope
The results of this clinical trial provide a new tier of hope to the pancreatic cancer community. This news illustrates that trials give patients access to state-of-the-art treatment that may be their best option, and they help speed scientific progress toward therapeutic breakthroughs. Clinical trials are the only way to make progress toward better treatments.

We are so appreciative of those who participate in clinical trials. We believe they are pioneers for progress and make an indelible mark for furthering treatment, and possibly saving thousands of lives in the future. If you have questions about this breaking news, please call our Patient and Liaison Services (PALS) program and speak with one of our trained PALS Associates at 877-272-6226, Monday through Friday from 7 a.m. to 5 p.m., Pacific Time or email pals@pancan.org.