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!

Welcome to OCF, Bart! Its always nice to have another survivor join our ranks. Thanks for sharing your story with us. Sounds like you are a real trooper!

Hi ChristineB,

Thanks. From a real survivor as yourself, that's a high compliment. Thank you!

Bart

Howdy Bart:

I enjoyed reading your "experience" with the blasted "C" word - it was very uplifting. Like me, you probably didn't even know what an ENT was until you were finally sent to one. My symptom was similar (swollen place under chin on one side), and I was told I had a sinus infection and that was a swollen lymph node NOT! When my throat started hurting some several months later, my doctor just gave me antibiotics. I could see my tonsil on the right side was slightly red, but doctor just gave me more antibiotics. Time passed, but swollen place on neck didn't go away; tonsils stayed red; and I checked around to see what type doctor treated people with tonsil problems. That's when I went to an ENT. He did a needle biopsy that came back NEGATIVE. More time went by, so I was determined to get tonsils out, not thinking anything like "C," but because my throat was always sore. Two ENTs wouldn't do it because they said tonsils removed on an adult was a big problem and very painful. I insisted, to yet another ENT, who reluctantly removed mine in Nov. 2007. Yep,squamous-cell cancer under right tonsil that had spread to nodes on left side. During the time delay, I went from a Stage I to a Stage IV Seven weeks of radiation with 1/day week chemo, feeding tube, and all the works! It's been five years and PET scan in January NED, but the side effects of the radiation seem to be coming back, or at least that's what the ENTs say. They blame everything on radiation, especially when they can't "see" a reason for a certain problem. There, I've ranted enough. I want to welcome you to our Club, although sorry you have to be here. You hit the nail on the head about Christine. She participates in numerous OCF walks/events, and hopefully you will see her on Facebook speaking to those in attendance. She is GREAT, and the OCF is very proud of her. Keep posting - love reading success stories like yours.

julieann

Bart,

What a great post! Inspiring is an understatement. Continued success in your journey as it seems each step gives hope to all that face this damn disease.

"T"

Hi Julieann and fishmanpa (Mark)

Thank you both for your warm and friendly welcoming words! It's a pleasure to be here (hell, it's a pleasure just to "be...") My (first) distant metastasis recurrence promoted me from Stage IV to Stage IV c. Five year survival rate, from dx, is Zero for those of us with the "c."

That said, I've been in much worse shape a couple of times in my life with the same odds, and yet here I am.

On Nov 5, '66, I was a Capt in the Army, stationed at Ft Sill, OK. At 0530, I was the sleeping passenger in my then new '66 Corvette (yep, I was single. How'd you guess?) when the driver, a young German Luftwaffe Feldwebel (Sgt) decided to run a red-light to save a couple of minutes on the way back to his temporary barracks. His entire unit was at Ft Sill, training on a US weapons system that the germans were purchasing from us, but they were headed back to Germany at noon that day and had been restricted to barracks as of midnight. So he was AWOL, technically, and didn't want to get caught.

A local cop saw him run the light and lit up the party lights in pursuit. The kid driving panicked and put his foot in it, and the car went airborne. The OK HP estimated his speed at over 145 mph when it did. It cleared an Armco guard rail with all but the left wheel, tearing that and the entire Left rear suspension from the car which continued airborne for 264' before landing on the nose and going end-over-end for more than 600' after that.

I was declared DoA at the scene, he was found over 80' from the car with a shattered left ankle, several cracked vertebrae and a 7" long fracture of the skull.

I had a right side flail chest; 7 ribs were broken off about 3" from the spine and overlapped about 3"; while 5 of them were broken off again on the side. My right lung was shredded by the jagged rib-ends and my chest cavity was filling with blood and bodily fluids which threatened to collapse the left lung.

I was admitted to the Post Hospital, officially DoA and left on a gurney in the ER OR while they worked on the kid for over 4 hours. I was actually taking one ragged-breath a minute, so they put a sand bag against my chest to give it shape, and a saline IV.

I'd thought that trying to walk on a tibia broken into 4 pieces was painful, but I was wrong. As soon as I was able to maintain consciousness long enough to stay sitting up, they sat me up and told me my lungs were now full of blood clots and I would have to cough them up. Now I don't know if you've ever broken or even cracked a rig, but that is painful. So much so, that trying for forcibly cough for any reason is way up there on any list of things to avoid if at all possible. I actually did this, and produced hunks of what looked for all the world like large pieces of raw liver the size of a man's hand with his fingers extended straight out.

Although they told me I'd be hospitalized six months and on convalescent leave for another six months, I walked out of the hospital 39 days after I was wheeled in on that gurney. In 67 days from the accident, I was declared fit to jump out of airplanes again, but the Army, in its infinite wisdom, decided that I was too big a health risk to go to Vietnam, and so I got out of the Army and went over with another government agency.

Three weeks after landing at Tan Son Nhut airbase, I was in Pleiku in the central highlands, getting assassinated. I took two .32 cal rounds to the gut and two through my right thigh, one of which went squarely through the Sciatic nerve and the other passed harmlessly through the muscle. That cost me the permanent loss of control of my right foot and the use of my calf.

The ones in the gut were not so benign, one went through the iliac artery, the second largest in the body. I actually bled-out in probably less than 3 minutes; the doctor at the 71st Evac Hospital, who operated on me when they brought me in, later told me that my survival of that was impossible, Rigor Mortis should,in his words, have been leaving my body by the time he saw me

I have that one in the back of L3 in my spine (it hit the spine - talk about a bone bruise...) and I have the other also, deep in the pelvic cavity. The two of them got my liver, spleen and nearly every fold of intestine in my body. Now that, mes amis, was not a fun recovery.

But I did recover and was back in Vietnam, at work, in less than 4 months later and stayed there for another 3 plus years doing my job.

So, why am I telling you this tale of woe? Because there's no woe it it at all.

When the shooter produced the gun and advised me that I was a dead man, I had every reason to believe him; and I have never been so terrified of anything in my life! All the clich�s are true; I thought that a freight-train would come roaring out of the hole in the end of that gun, and smash me flat! He was between me and the only escape route, and he started shooting when he was only 6' away!

I realized in a most visceral way that my string of luck had finally run out and I was definitely going to die in the next seconds with no hope whatever of rescue or escape; and at that moment, I had an overwhelming flash of Satori!

I realized that I was a dead man, but DEAD MEN HAVE NOTHING TO FEAR!

Really, I cannot possibly tell you how wonderful that feeling was! I'd been dominated by fear since I was a very young kid, and suddenly, it was all gone!

Not only that, but when I applied to Johns Hopkins for admission to their study to determine the impact of Psilocybin on death anxiety in patients with terminal cancer, they refused me because I don't have any. Dead (wo)men have nothing to fear, and freedom from fear is the best feeling in the world!

No one gets out of here alive so don't worry about it. No matter what the cancer takes from you - you always have something left, celebrate that and accept that life taking its pound of flesh is just the cost of living at all.

Well, we here are all paying our dues to life now, please make sure you get full benefit from the membership and LIVE.

My brothers and sisters of the big C.

Bart: incredible. Your courage and attitude are more than inspirational, they're just plain amazing. Thanks for the story and for being here for all of us.

Welcome Bart, and thanks for sharing.

Hi David2 and PaulB,

Thanks for the kind words, gentlemen!

And David, I don't see that as courage, although I appreciate the compliment. It's just the stuff of life. I seem to have been blessed with a "Timex" constitution, but it's not from any virtuous quality on my part.

Just as you, and everyone else on this board; something happens and we deal with it simply because we have no other choice.

We play the hand that life deals us, quite simply because we have no other choice.

I will say this however, I learned from Buddhism not to attach to outcomes. That way, you are never disappointed, whatever the outcome might be. When you learn to condition your thoughts that way, it all becomes good.

Bart

Bart:

And to think I was going to tell you my story about an abscessed tooth I once had! Hee, hee, hee. You are truly something else, and I so look forward to reading your posts. For an "Old guy," you sure have the spirit and attitude much greater than any "Young guy" I've dealt with. Keep on posting and a big hug from a "C" friend.

julieann