I'm Bill, a 57 yr. old male from Rhode Island. in July, 2012 I was diagnosed with Stage 4 throat cancer with HPV 16 thought to be the cause. After a brief delay to get a 2nd opinion and dental work, I began treatment . I had 39 Radiation treatments (IMRT) and 8 weeks of Cisplatin Chemotherapy, ending in Nov '12. In Feb '13 I had a clean PET Scan but started to get ear aches in June '13. MY ENT did several endoscopes and other exams but couldn't find anything. However this past Oct a CT Scan found a mass in my neck and a small spot in each lung.
They have told me my only option is Palliative Chemo and we are considering starting treatment on Dec 9th. The proposed agents are Carboplatin, 5-FU and Leucovorin. This may slow down the growth of the tumors but does have side effects that may hinder the quality of life for my final days.
My question is have any of you been treated with these agents and what type of side effects did you experience. Currently I live a fairly normal life, minimal pain, just a bit fatigued much earlier than before. Thanks in advance for your feedback....Bill

So very sorry to hear of your Dx. Did they ever find out if its HPV+? Anyway I would definitely rush out to NYC area and get a 2nd opinion from one of the CCCs ASAP.

I can't comment not he chemo though I am sure someone here can. Welcome I am sorry that circumstances bring you here. Where are you being treated? and is the mass in your throat confirmed by biopsy? I would ask about a potential neck dissection and then follow up with more radiation and possibly targeted therapy for the two spots in your lung (of course you need a cancer confirmation, and possibly a second opinion .. Take care I'm sure someone else will be along as well

Im so very sorry about your situation!

It cant hurt to get a second opinion at a comprehensive cancer center. They will have all the latest treatment options and maybe even a clinical trial would be available. Please dont give up, there could be something available that will give you a better outcome.

Comprehensive Cancer Center List

Best wishes!

I'm sorry to hear, Bill. I agree with Christine about a CCC, another opinion, Cheryl with treatment. I heard of the chemo treatment you're getting, but never had it myself, but did have 5-FU, if you have any questions with that. I'm getting Carboplatin soon myself, which has less toxicities than its relative, Cisplatin. Boston has several top CCC, and heard many are on the same avenue, close to one another, and you really can go more distant with hope lodges throughout the country, and other type accommodations, if you want.

Good luck with everything, and if we can help with anything, ask. I hope you have local support, someone to help you.

Hi Bill, welcome to the Family, as my friend Tony (n74tg) would say.

I'm in the same boat as you. I was stage IV when diagnosed, but I always suspected that it was worse than that, since I'd had the lump that led to the initial diagnosis for over 6 years, and had it biopsied at that time. Unfortunately, neither my family doc, nor the ENT who did the biopsy, thought it worth worry, so I disregarded it as being merely cosmetic.

Ah well, too soon old, too late smart, eh?

Anyway, I mention this because after my initial treatments (8 weeks rad and 3 applications of Cisplatin) I was "free of detectable cancer" on 12/10/09.

Seventeen months later, tumors showed up in my liver. The good news was that the liver is the most forgiving organ and can spring back from unbelievable abuse, thus the tumors were relatively easy to beat down with chemo, and I've done that three times already.

The less than jubilant news is that I earned my membership to the Stage IVc club. All further treatment is palliative only.

However, this time, we went with Xeloda (pills) which worked for #3 occurence, failed to do any good this time, and at mid-course scoping, showed growth in the existing tumors, plus a new crop in the other lobe of the liver.

This time, we're going back with radiation and I've just completed the Tx. This time, we packed each lobe of the liver with microscopic beads with a tiny chunk of Yttrium-90 (beta emitter) by going in through the femoral artery and inserting the beads directly into the arteries leading to the tumors from INSIDE the liver.

An unplanned bonus is the money I anticipate earning when I lease myself out to a small country to augment their electrical-power production. I'm so radioactive at this moment (5th day post the procedure) that my wife has to sleep in another room (for real). Tomorrow, we can resume normal life.

I've had nearly continuous chemo ever since joining the Stage IVc club, and frankly, my quality of life has remained fairly normal. I am plagued by "Chemo brain" and constipation is my constant companion, but that stuff is just noise, in the greater scheme of things and I remain a happy camper.

I'm grateful for the additional time it gives me to arrange things as advantageously as I can, and frankly, I'm happy to have the additional time just to enjoy the planet, my Wife, friends, and my cat, Waldo.

You're not alone, brother. My only advice is to avoid the "woe is me" trap, it is what it is and no one gets out of here (this life) alive. No one knows how much time we have on the planet, and in your case and mine, there are plenty of unsuspecting folks who are going to "call in dead" before our number rolls around. Live and enjoy every moment, that is the ultimate purpose of life.

Good luck,

Bart

Thanks you to all for your replies. I had my 1st round of treatments at Rhode Island Hospital. Yes a biopsy was performed on my neck confirming the cancer. The spots in each lung are very small (less than 1cm) no biopsy but the PET did look like it was cancerous. I went to Dana Farber in Boston for 2nd opinion 2 weeks ago and they proposed that chemo regimen described in my original post. Scheduled to start on Dec 9th.

Zengalib here was in a similar situation she underwent two clinical trials has a surgery on one of the spots in her lung and is now NED - more power to you...

Hi Bill - I've been a member of the forum for about 2 months, so I'm on the other end of the spectrum from you, really just getting started on the journey. So far, it's been easy to stay positive, to listen to what others advise, to avoid worrying about things you have no control over. I suppose it's easy to do when you're in the first course of treatment and everything looks good.

But, as you and many others have said, it doesn't always go as we would like. After trying to stay positive for so long, the bad news sometimes comes anyway. Then we find out what we are made of. Can we stay positive in spite of what looks like bad news. Can we keep up the fight with enthusiasm.

Fortunately, we have people on this forum like Bart, someone who has been through this not once or twice, but three or four times and he still maintains an upbeat, positive attitude; and though things aren't going as he would like he still takes the time to offer words of encouragement to others.

Bart taught me something early on after joining the forum. He has a phrase he uses "don't attach to outcomes". The first time I heard that it was like a baseball bat across the forehead, it really got my attention. To me it means it doesn't matter whether the news is good or bad, it is what it is, so now what are you going to do with it. Instead of worrying and fretting whether that next CT will show more cancer or less cancer is irrelevant, what is important is realizing that if it's bad news we just great it with "okay what do I need to do next", a never say die attitude so to speak.

Giving up and going quietly into that good night is an easy attitude to develop after bad news. That just lets the cancer win. Fighting, kicking and screaming all the way through the battle, never giving up, always going for that victory no matter how slight the chance is how I see Bart. It's how I hope I will be if it goes that way for me. It's how I hope you are too right now Bill.

It's darkest just before the dawn.

Stay strong Bill

Tony

Another metaphor is just put one foot in front of the other.

Sooner or later the storm will pass and the sun will once again shine.