Howdy.

I'm Bart, a married male. I'll be 74 in May. I'm here to offer support from a "BTDT, got the shirt" fellow (and incurable) patient.

In early '05, I went to see my PCP for a look at a large lump I'd just noticed under my right chin. He sent me to an ENT who did a needle biopsy. The path report from that mentioned Squamous Cells in a vague manner and I questioned my PCP about that. He was non-committal, so I told him that I wanted to know if it was anything to be concerned with, or not. He said that he did not think it was anything to be concerned about, so I ignored it. Until mid-2009 when I started getting a mild sore throat in that area and went to another ENT. Who advised me to get it removed, and ASAP. I did so.

My surgeon cleanly removed a tumor the size of a tangerine, and this time she read the path report to me and advised me that it was Malignant. She also set me up with appointments with a medical oncologist (MO) and a radiological oncologist (RO.) They, in turn, sent me for more diagnostic tests and treatments did not begin until they found the primary tumor, which was at the base of my tongue (and about the size of a golf ball! ) They also found three additional metastatic tumors in my neck.

The MO & RO decided on 8 weeks of radiation plus 3 applications of Cisplatin, three weeks apart, with the initial treatments commencing on the same day.

The MO wanted to hospitalize me for the first 5 days of the Cisplatin, but I had to refuse because I was, at that time, the sole caregiver of my 89 year-old maiden aunt who was living with me and my wife. The RO wanted to install a PEG before we started, because, in his words, "he was going to light my throat up like a Bessemer Furnace" and I'd be unable to swallow. I refused that also because it could be installed later if his prediction proved accurate, and in the mean time, I would be free of the aggravation of the PEG in my daily life.

I did agree to have a MediPort installed, and that kept me away from the gym or even working out at home, because the port has one end that is stuck directly into the Jugular Vein, and having that come loose inside your body is one of those things you don't want to experience, because you might not live long enough to get any milage out of it at the diner table.

In any event, for those who face this decision (to get a port or not), my advice for active patients is to forego it and use the opportunity to work out instead.

Although I am old, I was (and remain) quite fit, and have been lifting weights since I retired at age 58. At 5'9", I was a very solid 192 lbs when I started the treatments. Which, by the way, required me to drive 24 miles each way, 5 days a week for 8 weeks. And during which time I lost 38 lbs. And about 50% of my salivary production. And about 50% of my hearing range.

On the 10th day of my treatments, as I was starting to eat a bowl of ice-cream as a weight gain supplement, I noticed that the ice-cream tasted like cold poster-paste; no flavor whatever and the texture could only be described as "vile." From that point on, my sense of taste was completely gone for the next year, at least. It slowly returns, but the return is slow and unpredictable. I have knocked the cancer down three times now (each following courses of Chemo), and unfortunately, it seems that all varieties of chemo will take a toll on your nervous system. Hearing seems to be especially vulnerable, so tell your MO immediately if you start hearing tinnitis as he can change to another, less damaging chemo agent and save some hearing. That's why he changed me from Taxol to Taxetere midway through my second bout.

My Cisplatin treatments kept me in the chair for 8 hrs each, with a 15 min break to walk to the Radiation suite for my daily dose, then back to the chemo room, hauling my IV pole with me.

There only two good things I can say about Cisplatin; it works, and it doesn't cause you to lose your hair. Its easy to spell also, but� meh. It will nauseate you (big time) and probably make you lose weight. As I said, I lost 38 lbs because most days, I could barely keep one bottle of Equate Plus (350 cal, the cheapskate's version of Ensure) down. I gave up solid food entirely for that 90 day period, it's too much hassle when there is no taste, a vile texture and your minimal salivary supply is immediately absorbed by whatever food you have just started chewing into highly absorbent sawdust.

But the treatments did their job and I was free of detectable cancer for 17 months.

Until it showed up in my liver. Again, it took several months to decide how to treat it this time. The scans were not clear, it could have been one tumor or half a dozen because there were other (benign) growths there as well. We did a biopsy and determined that the primary suspect was, indeed, a distant metastasis and not a new variety, but there were others (he thinks they are cysts) that remained questionable.

The problem was that the area of concern was so large that radiation was ruled out, so we had to use chemo again. This time, the Taxol/Taxetere and Carboplatin cocktail.

I got that for 5 cycles (every Thursday for three weeks, followed by a week off was a cycle), Got scanned a couple of times, and eventually was declared Clean again.

On my first follow-up PET scan, 90 days later, it was back, this time in multiple locations in my liver again. Treated this outbreak with pills - my favorite - of a drug called Xeloda. I got started in October, '12 taking it 21 day cycles (14 one, 7 off) and two weeks ago, I got the news that I'm clean again.

Here's some things that you may encounter that might freak you out, if you're not expecting it. When you take a powerful agent, like Cisplatin, Carboplatin, Taxol or Taxetere, you will be given a blood panel/workup first. There will likely be days when one major element will be significantly below the acceptable lower threshold for that particular element and you will be sent home without any chemo. DO NOT PANIC.
It's just another manifestation of that inescapable law of the Universe, "Stuff happens."

My immune system crashed twice, and my red cell count at least once, and on every such occasion I was sent home without my chemo. Do not fear this, it's normal and it simply means you already have an effective level of the stuff in your system.

Most of these will make you lose your hair. It grows back, and fuller when it does.

Watch for neuropathy. Either tingling or numbness in your finger tips and toes; or tinnitis (ringing or rushing noises in your ear) and report it to your MO ASAP. These effects are permanent, but can be minimized by prompt attention and adjustments to your treatment.

A final bit of advice. Other than my first waltz with Madam Cisplatin, this has been a walk in the park for me. The reason is that I work out and work out as hard as I am able for at least a hour a day, three or four days a week.

This elevates the metabolism and keeps it elevated. It processes the chemo quickly enough to prevent most of the common side effects (You will lose your hair anyway, but it will grow back.) It's hard to do because you tire very quickly when you have a load of chemo inside, but do it anyway, you will be very glad when you see folks who don't.

You don't have to lift weights, briskly walking will help greatly as will any vigorous exercise. Heed Nike, Just do it!