Not So Fast, My Friend!

OK, so I just wrote about the fact that I finally had my last chemo treatment and all that would be left for me would be tests and follow-up doctor visits. Well, as it has turned out, I was wrong. Not my fault, mind you, but that's just the way things have turned out.

Here's what happened. I went to Dr. Ondrula's (my surgeon) for a follow-up visit last Tuesday. He noted that in checking my charts, I only had two different medicines as part of my post-op treatment, not three as he had thought. I just said I didn't know about that, I just went with what Dr. Y (my oncologist) prescribed. We left the office later and hadn't even made it home yet when Dr. Y's office called, saying it was important that I have an appointment with him that day. I had a hunch what this was about. Sure enough, when we met with Dr. Y, he indicated that Dr. Ondrula had called him earlier (as soon as we left obviously) and recommended that I be given this additional chemo treatment. Dr. Y agreed and needed to set things up with me. He showed us the form that he used for my original treatment schedule: It showed that for rectal cancer, if the patient had chemo before surgery (like I had), they should receive 5FU and leucovorin, exactly what Dr. Y prescribed. For rectal patients who did not receive chemo until AFTER surgery, they should receive 5FU, leucovorin AND oxiliplaten (administered each cycle through a 2 hour IV). But these are apparently outdated schedules and I do trust Dr. Ondrula to be up on the latest (in fact this is the second time that he had to tell Dr. Y about the latest in what's going in rectal cancer treatment, which should be Dr. Y's specialty). Oxiliplatin should now be prescribed regardless of whether chemo was given before surgery. It is especially to be administered when the cancer has spread (or metastasized). My research on the Internet confirms what Dr. Ondrula has prescribed. For example, from the Elaxotin web site (www.elaxotin.com):

"ELAXOTIN (oxiliplatin), combined with infusional (given through bloodstream) administration of two other chemotherapy drugs, 5-fluorouracil/leucovorin (5FU/LV) is approved by the Food and Drug Administration (FDA) for adjuvant treatment of people with stage III colon cancer who have had their primary (original) tumors surgically removed. This approval was based upon evidence of improvement in disease-free survival after 4 years."

"In clinical studies, of people with stage III colon cancer who had their primary tumors surgically removed, ELAXOTIN (oxiliplatin) plus 5FU/LV has been shown to:

• Increase overall survival rates by 5.5% when the recommended dose of 12 cycles of therapy is completed.
• Reduce the risk of colon cancer coming back."

Note there is no reference here as to whether chemo was given BEFORE surgery; rather this is for those who have already had surgery to remove their tumor. I did have Stage III rectal cancer, 3C to be exact (and colon and rectal cancer differ primarily in their location; both are considered to be colorectal cancers with many similarities). Fourteen of 22 lymph nodes in my tumor were cancerous, leading to the stage IIIC classification, so it had obviously metastacized. By the way, "adjuvant" simply means supplemental treatment following cancer surgery. So it appears clear that I should have been administered the oxiliplatin beginning back in July along with the 5FU/LV that I did receive.

I should add that further research on the Internet shows that stages I-III of colorectal cancer are treatable; stage IV typically is not (and I think you can figure out what happens when a cancer is not treatable). The next stage after 3C? Stage IV. My advantage? In Stage IV, the cancer has spread to distant sites beyond the lymph nodes. In Stage 3C, while more than 4 lymph nodes are cancerous (and I had 14), the cancer has NOT spread to distant sites. Fortunately my margin (area around the tumor) was clean - no spread of cancer. Another reason to be extremely thankful.

Now Dr. Ondrula's original assertion back in March that I would have 6-9 months of post-op chemo treatment makes more sense. Note that 12 cycles are suggested and depending upon the cycle frequency (once every two weeks or greater), the total time would take at least 24 weeks (nearly 6 months) or even 36 weeks for a tri-weekly cycle (about 9 months). I am now sure that he told me that back then based upon the oxiliplatin being administered. When Dr. Y told me my treatment would only take 4 months (4 weekly cycles, once a month), I did question him but he said "That longer length of time is not needed any more." He's the doctor and the schedule was good for me so I certainly didn't argue. In retrospect, I wish I had gone back to Dr. Ondrula then to at least tell him my schedule before it started to see if he questioned it. But that's water under the bridge now. Plus, since I have already had some post-op chemo, I get "credit for time served" and my schedule is not as long. Under my present schedule, I will be done by early February. If this had been prescribed properly in July, I still wouldn't have been done until at least January and maybe not even until April. So I really haven't lost anything, other than rebuilding after an emotional letdown.

Now if I had been on longer than a 4-cycle post op treatment schedule, my 5th cycle would have been last week, so I am hardly far removed from my previous treatment. It's just that psychologically I have been done with all of my treatment for more than a month and now I have to mentally gear up for additional treatment that I was not expecting.

So we set up the new treatment to begin as soon as possible, which meant my first treatment was today (Nov. 30). In the past for my post-op treatment, I would go in, get hooked up, have about a 20 minute IV feed of the leucovorin, and then leave - but I did have 96 hours of being hooked up (for the 5FU). Now I go in and have a two-hour IV feed of the oxiliplatin and leucovorin (preceded by a dosage of anti-nausea medicine) so my stays on Monday will be much longer. But since I only need 46 hours of the 5FU, I get unhooked now on Wednesdays, not Fridays. And since most of my previous 5FU side effects didn't happen until Thursday or Friday, hopefully I can now avoid or minimize them.

Ah yes, chemotherapy side effects. For oxiliplaten, the most common are:

• Peripheral neuropathy (or an extreme sensitivity to cold), characterized by numbness or tingling of the hands or feet caused by exposure to cold. It is suggested I avoid iced drinks (YIKES! No more ice water or iced tea?); stay out of the cold as much as possible; wear gloves, hat, and scarf at all times in cold weather; have gloves near the refrigerator in case I need to get something out of the freezer; and even have someone else start and warm my car up for me in the morning.
• Nausea and vomiting
• Diarrhea
• Low blood counts
• Fatigue
• Loss of appetite

Obviously I'm most concerned about the sensitivity to cold as we enter winter. I'll follow their rules initially and then stretch them to see what I can tolerate (hey, one of my theme songs is "Take It To The Limit") - unless I'm dealing well with things as they are without testing limits. One positive is that these side effects are reversible and last only 3-5 days after IV administration (probably 3 days early on, stretching to 5 days in later cycles; as like my previous treatments, chemo effects are cumulative). It's Monday night now and admittedly early in the process but so far, so good - no side effects showing, but I'll keep you informed. It's not too cold now but by Wednesday the temps are supposed to drop in the 20's and by Thursday we should have some snow. Hope you don't mind doing all the snow plowing this winter, Scott - at least every other week.

All along Dr. Ondrula has strived to do all he can to prevent the return of my cancer within the first two years. From the reading I have done, others look at 5 years - if you survive 5 years without the return of cancer, then you can be considered fully cured. So June of 2014 (around my 62nd birthday) will be a significant (and hopefully joyful) time.

I know this was long and technical and if you weren't interested in the technicalities, I apologize, but such is the current reality of my life. One session down and 11 to go (5 more IV/"juice" hook-ups and 6 disconnects). My hope and prayer is that it will go fast (yeah, winter always goes fast, right? Only when you're a kid who loves to play outside in the snow, make snowmen, skate, and have snowball fights). By the way, I was going to divide this up into two blogs but Cyndy said to keep it as one, so if you think this was too long, blame her (whoops, I shouldn't throw her under the bus; she's got all of the documentation that Aflac requires for reimbursement so if we want to get paid, I had better be nice to her).