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