John,

Thanks for the encouragement. Not going to lie, the chemo scares me a bit - everyone says it ****s you right up. Still, it all leads to the cure, so I guess I'll have to do it, too.

Thanks for the encouragement!

The Hellion

Update - had The PEG installed on 3/19. Hurts like hell still, but I'm hopeful tomorrow feels OK. 3 days of feeling like I got punched in the gut seems kind of lame .

Chemo appointment scared the hell out of me -- Cisplatin sounds terrible and I get three big bags, once every three weeks. I'm really hoping I don't get severe permanent hearing loss -- I love music so much and it really is a constant companion I would mss.

I think I'll do treatment updates in that section, assuming I do them. I'm notorious for starting things and then kind of fading away and my writing could well fall into that category.

Meanwhile, thank you to everyone that provided words of encouragement and relayed their experiences. Knowing so many of you did it and survived so actually quite helpful, as is knowing there is so much great stored wisdom regarding treatment and side effects.

Thank you all,

The Hellion

No doubt about, both the peg tube and cisplatin suck. My MO said 10% have hearing issues with cisplatin. Form what I see on this forum, watch out for ringing in your ears. It also leads to constipation. That's about 99.9% of the time. Make sure you talk to the docs about that. It also made me very sick and stupid. I received the large doses on Monday and the full brunt of hit hit Wed night. Driving was difficult for me tues-thurs. On the second dose I was unable to drive that week. Its kind of a mixed bag, some people are fine, others find it extremely disabling, and some have to switch to weekly doses or to carboplatin do to severe reactions.

Staying up on the meds might become difficult. I had a hard time remembering what I took and when. I resorted to a log sheet. I wrote down what I took and when. I even started to write done feedings and quantities.

Peg tube is also a pain. My advice is put a little water thru it several times a day to keep it clean and rotate it 1/4 turn two times a day. Don't use it for feeding until you have to. Eat by mouth as long as you can. Eating by far is the most difficult part of the treatment. I was never hungery. I also found food repulsive. So I ate when the clock told me to eat. I did not get hungry for 5 months after treatment.

Stay with us thru treatment, you will be glad you did.

The numbers, and information, have changed the past few years with HPV positive vs. HPV negative oropharyngeal cancer, even since 2009 when I was diagnosed. Anyway, good luck with everything.

Hellion, the Cisplatin/Radiation combo is not an awful lot of fun, and that's a fact. Hockeydad nailed it in his description. You won't enjoy it, but it won't be the end of the world either. Three months post treatment and you will be a new man with all of this behind you. I suspect that you'll find it a lot like an extended bout of the flu; you may even find yourself going from both ends, but as I said, it won't be as bad as you anticipate, and it will be over before you know it.

Meanwhile, here are some things you MUST be alert for:

Loss of hearing: I've lost about 50% of what I started with. This is a permanent loss, so do not hesitate to notify your oncologists (both RO and MO) immediately if you notice tinnitus. The Cisplatin kills the cillia in the inner ear whose function is to translate the motion of the fluid in the cochlea into nerve signals that produce sound when processed in the brain. From my own experience, I think most chemo agents cause this kind of neuropathy to one degree or another, so be vigilant if your hearing is important to you.

Constipation: It was a MAJOR problem for me, but I've had a problem keeping my bowels moved since I got gut-shot back in '67. The Cisplatin aggravated an existing problem with me, and I've had to take two Ducolax tablets AND a capful of Miralax power (ethylene glycol powder) DAILY since '09.

Constipation also adds to the importance of adequate hydration (and all chemos that I've had - Cisplatin, carboplatin, Taxol, Taxetere and Xeloda) have caused severe constipation. Adequate hydration will go a long way to reducing this problem.

Finger and toe tip neuropathy: Be acutely aware of the onset of the feeling that your fingers or toes are "falling asleep," the classic sign of the onset of neuropathy there. If you don't catch and report it immediately, you are apt to have permanent loss here as well.

And it may not be a tingling sensation, in my case, I started noticing a feeling like the inner lining of my gym shoe had come loose and was bunching up under the ball of my foot, and I ignored it. Bad move.

But the good news is that the anticipation is always worse than the event.

I have a good deal of neuropathy that is permanent, but frankly, it's really nothing but a minor aggravation and is easily ignored.

Be alert, but not paranoid about this.

Good luck, campadre,

Bart

Thanks for the advice, hockey dad and Bart! Not gonna lie, the anticipation scares me badly and the fear of hearing loss is enormous.m I think I can handle almost anything but permanent, severe hearing loss.

I know the pain is going to be pretty heavy, but I plan to find some way to eat (or at least liquid food) throughout. Just going to have to tough this one out -- sounds like you've toughed out worse in your day, Bart, so I'll hang in there. I'm glad I "know" people who have been on the road before me and made this work -- it gives me confidence I'll get through this.

Thanks fellas, I'll check in when I get going!

Cheers,

The Hellion

The same goes to watch out for any vision changes, and to tell your doctor if they occur. Baseline tests before treatment like vision, hearing,TSH, testosteroe, may be beneficial, in addition to other standard testing, to monitor during and after treatment, some which are done anyway. but not all are.

Also good to know. Thank you, PaulB!

The Hellion

Kevin also had an OSHA threshold change in his left ear. He works on the North Slope in Alaska and they have annual hearing tests because of the noise in the shop. It was enough of a loss to be considered OSHA recordable. Thank goodness it is only his left ear as I do find myself having to repeat often. Watch for the ringing. They can always switch to Carboplatin if they deem that acceptable.
I wanted to tell you and Oz that we finished tx at the end of October and he was back to work in frigid Alaska January 5th. It was terrifying for me to let him go, but he is a very determined guy, like the 2 of you, and he made it work. He usually does 3 week hitches, but the first one back he only did 2 weeks. That's 14 days in a row, 12 hour days. Needless to say he was whipped when he got home but ready to go again 3 weeks later and has not missed a beat since.
You guys got this. By summer you will be done!!
Kathy

Change to the change to the changed changes. I'm starting Thursday of this week. My radiologist has the plan designed and set, so they called chemo and Thursday is day 1. I'll get my rad then I'll go across the street for my cisplatin.

This stupid PEG is creeping me out big time, so I am going to keep hydrated/fed orally. Recently bought a blender that can probably make smoothies out of granite and diamonds, so....as of right now, I WILL find a way to get through this without this Frankensteinesque apparatus.

I'm scared and worried-- the pain, nausea, side effects, etc, but I get to keep my tongue and larynx ( at least until they see if this cured me ) and I've seen people who have it worse than me soldier on, so I shall overcome. Fear, as the Bene Gesserit say, is the mind killer. More importantly, I think it's perfectly reasonable to be apprehensive -- it's sure as hell not going to stop me. I just need to remember that this is temporary, it's an inconvenience, but my team of doctors (f*** yeah, I have a TEAM of people looking after me -- when I were an urchin living under a bridge I never thought I'd have a whole ****ing TEAM of people dedicated to taking care of me) are all thinking CURE. No way I'm going to argue with THAT!

My wife is confident we walk away from this. Changed yes, but we walk away. I think so, too. Now if I can just learn to sleep comfortably with this idiotic tube sticking out of me, I'd be golden!

If there is one thing I've (re )learned over the past month, it's that you take what you're given and if you don't like it, you do your best to punch it in the face and that's what my team is going to do to this cancer. I just wish I was the one pulling the trigger, because I'm not used to letting other people fight my fights for me.

Diagnosis to treatment was a journey - one full of fear and uncertainty, pain and no small amount of sadness. My wife and I have been walking that path, looking for this path. Now we have found it, and for the first time we've let others set our course and that's difficult for us. Now we'll walk it, though -- with trust and what passes among us for faith and, most importantly, together.

A new journey, a new life starts Thursday.

Kind of reminds me of a song:


I always drive like a madman,
But you'll soon get used to that
I believe if you're moving fast enough, then
You don't ever have to watch your back

Or if you prefer,

I'm heading north, I'm heading home doing 125
Close my eyes and count to ten -- haha, I'm still alive
Perfect, perfect tunnel vision
Razor sharp and racing, racing
These moments, immortal,
No one touches this


Cheers,

The Hellion