PONOGRAMS

 

Ponograms:

1-24  The First Twenty-Four
25-48  The Second Twenty-Four
49-72  The Third Twenty-Four
73-96  The Fourth Twenty-Four
97-120  The Fifth Twenty-Four
121-on  The Sixth Set


121  TV Shows That Never Were - 3
122  Genealogy Kicks - 2
123  TV Shows That Never Were - 4
124  From Land to Lindbergh
125  Pono In Dreamland - I
126  Pono In Dreamland - II
127  Licensed to Drive
128  TV Shows That Never Were - 5
129  Colon Cancer Surgery
130  CC Reattachment
131  CC Chemotherapy
132  CC Personal Review
133  A Trip to Maine - 1
134  A Trip to Maine - 2
135  TV Shows That Never Were - 6
136  Lucky I Live South Maui
137  TBD

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CC CHEMOTHERAPY

Introduction

 

This information is primarily about Pono’s chemotherapy after colon cancer surgery, but it was written at various times that may cause confusion to the reader.  It starts with post-surgery lead up and beginning the chemotherapy, then contemporary coverage of the process to its end, then comments written two and six years after the entire cancer experience.  I hope that helps.

 

Chemotherapy after Colon Cancer Surgery

So why am I taking chemotherapy?  The surgeon believes he got all of the cancer.  The seven lymph nodes harvested were negative.  Physical examinations, blood tests, x-rays and CT scans all are negative.  For all intents and purposes, I am a cancer survivor.  So why am I taking chemotherapy?

In any cancer surgery, there is always the possibility that one or more cancer cells got away.  Unfortunately, even one is enough to cause a problem.  Now, if I were 100 years old, it would be difficult to increase my life expectancy with chemo, so the decision not to would be fairly easy.  If I were 50 years old, significant improvement in life expectancy could be realized, so the decision to do it would be fairly easy.  At 71 years old, the decision isn't quite as easy.

Statistics indicate that a person with my profile has an 82% chance of survival for 5 years without chemo and chemo improves that chance to 87%.  Granted these are just statistics and statistics don't apply to an individual.  So it boils down to a tradeoff just like everything else in life.  Six months of side effects to buy a better CHANCE for survival.  I must admit I took a middle ground.  I agreed to START chemo, knowing that if the side effects are too much for me, I can stop.  So far, so good!

The oncologist scheduled me for a six-month regimen.  The regimen is known as FOLFOX 6.  The recipe includes oxaliplatin, leucovorin, and fluorouracil.  Quantities are determined by a formula using the patient's height and weight.  According to that formula I have 1.98 square meters of skin.

I have a blood test on Saturday.  I go in to the oncologist office on Monday, have an IV plugged into the implanted port, and then sit for two or three hours as the majority of the chemicals are input.

The IV is left attached and reconnected to a portable pump about the size of a paperback book or a VHS cassette.  The balance of the fluorouracil is input over the next 46 hours.  The pump becomes my friend and constant companion for that period.

On Wednesday, I return to the oncologist office for removal of the IV.  Then I have 12 days free before the next "hammer".  My instructions are to walk "about two hours per day" and drink "LOTS of fluids", try not to lose weight, report side effects, and hang in there.

At this writing, I'm nearing the end of the second two-week period (of 12).  Perhaps a little early to make generalizations, but enough to report some experiences.

The first period, I felt quite normal from Monday through Wednesday.  Then Thursday through about Sunday I had a bit of nausea and fatigue.  The nausea was easily taken care of with a pill (prochlorperazine).  The fatigue resulted in lots of sleeping.  The second week I felt a little stronger each day and was just about back to "normal" by the following Monday.

The second period was very similar day to day, with a couple new things.  On Wednesday after the IV removal, my legs and arms developed little red spots.  I had blood work for platelet count and saw the doctors.  The oncologist said the platelets looked OK and decided to wait and watch.  The spots subsided and (in my professional opinion) are now gone.

Nausea remained low-level but fatigue was a little more pronounced.  Sensitivity to cold in the mouth, throat and fingertips was noticeable (I think this is called neuropathy).  Grapes taken from the refrigerator had to be allowed to warm up a bit before I could touch them.  Bottles and dishes taken from the fridge required a towel for comfortable handling.  As I near the end of the period, this effect is diminishing.

One effect that nothing I read ever predicted has been developing.  I have sensitivity to smells.  The smells of laundry detergent, fabric softener, and even the bath soap I use have become obnoxious to me.  I am experimenting with solutions but some sprays intended to mask smells are worse than the smells themselves.  I have odor free fabric softener and I'm shopping for "free" detergents and soaps.

A suspicion I harbor is that the smell is me!  I am very careful about hygiene, but I wonder if the chemicals are just oozing out of me?

The oncologist thinks that it is a side effect on the olfactory nerves.  He suggests chewing gum or mints or something to mask the effect.  I think he is right.  I took an experimental tour through our biggest shopping mall to expose myself to lots of smells.  I found that about half of them are obnoxious, another quarter or so are just barely tolerable, and only a small number are pleasing.  It wasn't like that before chemo.

I think basically I'm doing OK with the chemo so far, but there are 10 more hammers to come.  Stay tuned.

 

Chemotherapy after Colon Cancer Surgery - The Conclusion

Chemotherapy is a nasty business.  By their nature, the chemicals chosen kill fast multiplying cells.  They effectively kill the bad cancer cells, but they also attack good fast multipliers.  This includes platelets and white blood cells.  Doctors devise a plan based on weight and height for the typical person of those dimensions, but of course no one is typical.  They monitor blood numbers and side effects, and the plan is adjusted as necessary.

The plan for me involved 12 iterations of a two-week cycle.  I was to have a blood test on Saturday.  On Monday the oncology staff evaluates the numbers and computes the recipe.  If all is well, I go in for an IV with most of the chemicals - from 3 to 5 hours.  Then home with a 48-hour portable pump for the balance of the dose.  On Wednesday I return for disconnect, and then recover for the rest of two weeks when it all starts over.

Doses 1, 2, and 3 were administered according to the plan, but then came the first hitch.  Saturday blood numbers were too low, retest on Monday was still too low, retest on the next Saturday was still too low, but Monday was in range.  Based on that reaction, the oncologist cut the dosage of oxaliplatin, the primary killer, to 3/4 strength and gave me dose 4 after 21 days instead of 14.

Because of the problem with number recovery, I requested blood tests on Monday instead of Saturday to maximize recovery.  Dose 5 came off in 14 days.  However, the next Monday blood test was too low again and dose 6 was postponed for a week.  Because of the slow recoveries, a series of five shots of Neupogen to be self-administered daily starting three days after the chemo was prescribed.  The shots really boosted white blood cells but they went down before the next dose so we changed to a 2 1/2 week cycle.

The 2 1/2 week plan was good for doses 7, 8, and 9 and up to dose 10.  However, starting with 7 they added a 1/2 hour calcium/magnesium cocktail before and after the other chemicals, because neuropathy was setting in.

By the time I went in for dose 10, the neuropathy was quite severe.  We all discussed the situation and decided to discontinue the oxaliplatin.  This meant we could also discontinue the Neupogen shots and the calcium/magnesium cocktail.  With this relief I sailed through doses 10, 11, and 12.

So I didn't quite meet the intended plan, but I did go through 12 cycles without severe damage to myself and if there were any bad guys in there, it looks like "the ox" and his friends got them!

Here's the summary - columns are dose number, days since last dose, amount of oxaliplatin, and comments.  Comments include some actual quotes from Pono's e-mails.


1

-

Full

Blood test was OK.  Side effects were there but minimal.  I felt quite normal from Monday through Wednesday.  Then Thursday through about Sunday I had a bit of nausea and fatigue.  The nausea was easily taken care of with a pill (prochlorperazine).  The fatigue resulted in lots of sleeping.  The second week I felt a little stronger each day and was just about back to "normal" by the following Monday.  "I feel quite well basically, but it's like everything I do is in slow motion.  I have a terrible time starting projects or chores and sticking with them."
 

2

14

Full

Very similar to first period day to day, with a couple new things.  On Wednesday after the IV removal, my legs and arms developed little red spots (possibly petechiae).  I had blood work for platelet count and saw the doctors.  The oncologist said the platelets looked OK and decided to wait and watch.  The spots subsided.  Nausea remained low-level but fatigue was a little more pronounced.  Sensitivity to cold in the mouth, throat and fingertips was noticeable.  Near the end of the period, this effect diminished.  Great sensitivity to smells.
 

3

14

Full

"I had a fairly typical 2-week session except that the fatigue was deeper and the sensitivity to cold was more pronounced. All my mucus membranes feel like they will start bleeding if you look sideways at them. Chewing nuts or cookies is a scary experience. All the other side effects are still there but mild enough to deal with."
 

4

21

3/4

Having four blood tests before numbers were good enough to go resulted in a one week delay.  Because of that, dosage of oxaliplatin was cut to 3/4 strength.  "Each session is a little different. .... Fatigue was very deep and mouth sores occurred with the fourth dose. The other nuisance level side effects are always there, but tolerable."
 

5

14

3/4

"I think this last has been the easiest treatment so far. Still fatigued, but all the other side effects are very low level. By the way, I haven't lost any hair yet, but then I have very little left to lose."
 

6

21

3/4

"I think I mentioned the side effect of sensitivity to smells. I have found unscented hand soap, dish detergent, laundry detergent, and fabric softener, and they all help, but EVERYTHING smells."
 

7

16

3/4

"I have started to have neuropathy (numbness in the fingertips) so they added a 1/2 hour dose of calcium and magnesium salts before and after the office doses.  Total of 5 hours in the chair yesterday."
 

8

19

3/4

"Side effects are really minimal compared to others with whom I have compared notes - I think I'm pretty lucky!"
 

9

16

3/4

"It was the worst yet. Fatigue was extreme but letting up now and neuropathy is deep and constant. Fingers and toes are numb. Turning pages and typing are very difficult. Opening boxes, cans and bottles is quite a challenge. Taking 500 mg B-6 daily for the neuropathy. That is 25000% of daily requirement! They give me indigestion and cause output of little B-6 bricks. However, I am basically functional and I can see the end."
 

10

19

None

"The oncologist, the pharmacist, the nurses and I discussed my condition at length, and based on my progressive fatigue and neuropathy we all agreed to stop the oxaliplatin - the really toxic component of my recipe. I received and will continue to receive the other two main elements, but the bad one and two of its supporting drugs stop, the calcium-magnesium before and after stop, and (joy of joys) I don't need to self-administer Neupogen anymore. I was done in 2 1/2 hours instead of the usual 4 hours or more."
 

11

15

None

"As of now I feel pretty well, but still tired (low blood counts) and with annoying neuropathy in fingers and toes."
 

12

13

None

"There was no lightning or thunder, no bugles or harps. Just hugs all around and best wishes and I went on my way. Chemo is done! I'm left with a bit of fatigue, numb and tingly fingers and toes, some mouth and throat discomfort. Hopefully all of these side effects will go away, but the oncologist warns that the neuropathy may take a long time and may never go away completely."
 

  

Two Years after Colon Cancer Surgery

More than two years have passed since my colon cancer was removed.  More than a year has gone by since I had the last chemotherapy.  One more minor surgery involved repairing a hernia at the colostomy closure and removing the implanted port.  It's hard to believe it all happened, but I'm sure glad to be done with it.

Basically, I feel fine.  All the appropriate tests indicate no sign of cancer.  Interval for doctor visits has gone from 3 months to 6 months.  Interval for sigmoidoscopy exams remains at yearly.  My weight returned to the pre-surgery level and continued up.  With attention it has now returned to the pre-surgery level.  Most of the chemo side effects went away fairly quickly.  The nausea, fatigue, mouth sores, and sensitivity to cold, smells and tastes are but a memory.

I'm left with just a few reminders.  I have neuropathy.  My fingertips, toes and feet are numb.  The condition seems to be lessening, but the rate of change is very slow.  The oxaliplatin in my chemotherapy is the culprit and it was discontinued toward the end of my regimen.  According to the oncologist, the platinum in that drug actually damages long nerves (spine to hands, fingers, feet and toes).  Studies indicate that it may take anywhere from three months to two years from the end of chemo for neuropathy to subside.  However, in some folks it never ceases.  Meanwhile, neuropathy is my excuse for not playing golf - the balance thing, you know.

I have a fairly deformed abdomen.  Fortunately I don't make a living modeling bathing suits, but I also don't show off the scars very often.  The scars alone are bad enough, but then I had a hernia near the colostomy closure.  The hernia was repaired, but I still have a rather pronounced bump in that area, kind of like I'm hiding a donut under the skin.  In addition, an ancient appendectomy (performed back when cleanliness standards were not that good) infected and left a huge scar.  That spot was the site of a cecostomy during the colon cancer surgery and the combination left me with a rather deep depression.  The navel is nothing but a fold of skin now due to an imprecise stapling of the major wound.  The major wound left a 10" or 11" scar right down the middle.  It ain't much to look at, but it holds everything in, and at my age, I guess that's enough!

The last reminder may be just old age.  I tend to sleep about 10 hours per night.  I've always been a good sleeper, but I don't remember the 10 hour thing since I was in my teens.  Then I either slept 4 hours or 18, depending on the activities du jour.

Anyway, cancer came and cancer went, and two years later Pono is back at genealogy research, website maintenance, communication, and enjoyment of life and Maui nei!

 

Six Years after Colon Cancer Surgery

More than six years have passed since my colon cancer was removed.  More than five years have gone by since I had the last chemotherapy.

Three years ago I had a melanoma (skin cancer) removed from my chest for yet another scar, but other than a basal cell carcinoma and some pre-cancerous lesions, nothing further came of that so far.

Two years ago on a holiday three-day weekend I got sick, called 911, went to the hospital, had a battery of tests, and had my gall bladder removed (laparoscopic cholecystectomy) and the common bile duct cleaned out (endoscopic retrograde cholangiopancreatography - ERCP).  Both procedures were done with endoscopes, so I was back home in three days.  The interesting thing about that is that the first time I saw the oncologist after the colon cancer surgery he wondered why the surgeon hadn't removed my gall bladder.  I got the impression from him that removing the gall bladder during colon cancer surgery was common!

I am currently feeling just fine.  I was released by my oncologist a year ago.  My primary care physician still watches my Carcinoembryonic Antigen (CEA), Prostate Specific Antigen (PSA), lipids and liver numbers every six months.  After the colon surgery I had yearly sigmoidoscopy exams, but last year I had a colonoscopy.  All the appropriate tests indicate no sign of cancer.

Last time I saw my primary, he ordered a fecal occult blood test (fobt - stool sample test for blood).  It came back positive.  I got the result online and was of course concerned.  The next day I got a call from someone at my HMO who really confused me.  When I finally got to the bottom of it, it turns out that once a person has had colon cancer, the fobt should not be administered because it often comes back FALSE positive.  At the moment I believe that barring a bad CEA number or the appearance of other symptoms, the only testing I will be subject to will be a colonoscopy every five years!

I'm left with just a few reminders.  I still have a bit of neuropathy.  My fingertips are just slightly tingly - especially if I let my fingernails grow out a little bit.  I don't understand why it is that way, but it is.  My feet and toes are still clunky - they have feelings, but it's like the feelings are masked.  While the neuropathy is a nuisance, it has little impact on my activities.  I did quit playing golf when I had the surgery and I blamed it on the neuropathy, but I think now that I was just frustrated by loss of flexibility due to age.

The hernia at the site of the colostomy closure is quite pronounced, and all the scars on my torso are a sight to behold, but I don't appear in public without a shirt so it must be other things about me that offend people!  I have thought about having the hernia repaired (again), but I hear talk about the failures of hernia repairs using cadaver tissue and also mesh, and I wonder if it is worthwhile to take a chance.  It is uncomfortable, but not painful, so why bother?

I still tend to sleep a lot.  In talking to first cousins who know about my mother's side of the family I've learned that sleeping was a common trait with that bunch, so maybe the practice is genetic and unrelated to the surgery.

I walk 4k nearly every day, missing only 30 days in 2010.  My weight fluctuates - if I don't watch carefully it can get out of control.  Blood pressure, heart rate, and other numbers please my HMO, I have a new granddaughter who is coming to visit soon, I'm busy and happy and life is good!

Doctors focus on five years of survival after colon cancer as an indication of being cured.  To repeat the statement in the Chemotherapy section, statistics indicate that a person with my profile has an 82% chance of survival for 5 years without chemo and chemo improves that chance to 87%.  I chose six months of side effects to buy a better CHANCE for survival.  Either I would have survived without chemo, or the chemo killed some leftover cancer cells and that made me survive.  I'll never know.  The chemo was no fun, but I'm not sorry I chose that path.  From the doctors' points of view, I am now a cured cancer survivor!



AFTERWORD

This P-gram is the third of a set of four that cover my experiences from the end of 2004 through much of 2005.  This one covers the chemotherapy after colon cancer removal.  The fourth wraps up my personal views on the process.

It may be that you have visited my website and read this in a slightly different format.  That info will remain online until I have finished reformatting it and sending it out as Ponograms, and then be expunged.  Why?  In my uninformed youth I developed “Pono’s Colon Cancer” using frames that turn out to be unsupported by some browsers.

If you can’t stand the suspense after reading this one, you may want to jump to the online version instead of waiting until I send it out as a Ponogram.  (If your browser can handle it.)