topic Re: Not As Bad...as I feared in Treatments and side effects

Not As Bad...as I feared

Azjoetrucker — Thu, 02 May 2019 00:17:03 GMT

I am in my 5th week of Radio and Chemo treatments for Neck and Head Cancer.

I wish only someone had informed me that something as simple as a 500mg dose of acetamynophen twice a day could make a big difference in managing the swelling of the throat.

I decided before beginning treatment that a feed tube was simply not an option...and believe me, paid a stiff price in weight loss and dehydration in weeks 2 and 3.

By the beginning of week 4 taking acetamynophen reduced the inflation and pain enough to allow me to drink my 1500 calorie goal.

Re: Not As Bad...as I feared

Bugzapper — Fri, 03 May 2019 14:02:48 GMT

I'm so happy to meet you!.. You sound exactly like me... Determined not to have feeding tube!!!.. Tounge cancer with neck dissection and partial glossectomy. Second week of radiation now on a 33 course with 2 chemo, 1done. Feeling good now but I know what's to come. I'm most interested in bareing through it and toughing it out without the feeding tube.. I found the same with Advil 400mg for specificly a major two week headache but have found out quickly that it aides in the soar and swelling throat!... So... Do you have any more words of wisdom for another one that refuses the TUBE?

Re: Not As Bad...as I feared

Anonymous — Fri, 03 May 2019 21:34:45 GMT

You are all so amazing how you cope with all that and decision making.

I am newly diagnosed with PNET Carcinoid Syndrome in august 2018. I have chosen not to have treatment.

I dont know whats to become of me if i do.

I will only have surgury if its 100% nessecery.

I refuse treatment as it is incurable at the end of the day and i think why be sick slowing down the tumor when treatment makes me sicker and operations will change my life forever.

Thats if i survived the high risk procedures they want to do.

But thats just me and my situation ...everyones is simmiliar but differant. Best wishes for all of us.

Regards

David

Re: Not As Bad...as I feared

Azjoetrucker — Fri, 10 May 2019 15:47:32 GMT

You can do it!

I'm now at the 6th week with Radio and chemo and the throat pain is manageable now. I tore up into a Rotisserie chicken this week and i can tell you it felt like heaven!

The mouth ulcerations and pain is pretty much behind, but appettite is a big issue-non existent. The problem after that 4th week for me was just forcing myself to eat.

Better now but changes daily.

I found during those painful swallow days that precooked shrimp microwaved in lime juice then smothered in a garlic butter sauce really went in and down easy with minimal pain or discomfort.

Re: Not As Bad...as I feared

Azjoetrucker — Fri, 10 May 2019 15:53:17 GMT

David...i respect your decision but let me share this.

Alongside the throat cancer i am also diagnose with stage three kidney disease. Next stop is plugging into a dialysis machine...which I WILL NOT do.

But if the treatment allows a few more days before the inevitable where something more can be accomplished, i believe its worth the Hell Trip.

You sure that what you have is terminal?

Re: Not As Bad...as I feared

Azjoetrucker — Fri, 10 May 2019 16:04:29 GMT

Hey Bugzapper,

Week five caught me with a nasty case of nausea in public.

They (my esteemed Quacks aka Drs.) had prescribed ondansetron for nausea but I hate medications from the establishment and tried chewable Ginger tabs.

They work great and only had to use them twice or thrice to allay nausea.

P.s. i know that dairy products are supposed to be anathema for us Mucosa guys...but 6oz of milk and 3 scoops of ice cream pack about 350 calories that slide past a sore mouth and throat...

Re: Not As Bad...as I feared

Bugzapper — Fri, 10 May 2019 21:12:13 GMT

You rock!!!!... I'm in maybe day two of the mucous shit. Little soar around the gums but I'm eating like a horse. No changes there yet.... Did I read correctly that your stuff went away before you treatments were over?.... I'm also wondering if your dealing with a chemo?. I've got one session under my belt, one coming up on Wednesday and then they want to do another at the end.

I'm loving your info and slight sarcasm.. Thanks for the giggles

Re: Not As Bad...as I feared

Azjoetrucker — Fri, 10 May 2019 22:13:31 GMT

Hey BugBugzapper...

Yah I'm doing the Chemo once a week. I've got two more weeks to go come Monday.

Uh, the only thing that eased back after i started taking acetaminophen was the swelling of the throat at the soreness in the mouth.

Their Px for Oxycontin didn't help at all with the pain.

Now ending week 6 i can tell you i can already eat solids...just my soddy appettite won't cooperate so I'm still struggling to eat around 1600 to 1800 calories a day.

What i am finding is that i am basically living on the couch. Hard to explain...it's like that's all i want to do...read and sleep, eat a bite, hit the Loo and back to the couch.

Re: Not As Bad...as I feared

Azjoetrucker — Mon, 13 May 2019 15:58:49 GMT

This is the home stretch-last 4 Rads and 2 Chemos.

It occurred to me that maybe the way to beat fatigue is to get back to exercising. Just situps, pushups and yard work today.

Went nuts yesterday and ripped into a kettle cooked potato chips bag. Boy can you spell Day After Throat Pain? But i tell you-oh they tasted wonderful...thank God for Acetamynophen!

Re: Not As Bad...as I feared

Azjoetrucker — Tue, 14 May 2019 13:16:12 GMT

A little exercise goes a long way improving energy level, no doubt.

I had stopped my normal routine of situps, pushups and kata when my calorie intake dropped below 1000. Getting now tasteless stuff past mouth pain, swollen raw throat and heaving stomach was a fight a bit beyond me. It took a week before experimenting with different food items got me over the 1000 calorie mark and soon to the 1200-1400 calorie safety net.

My ideal weight is 150 but I went into Chemo/Radio treatments at 162. Being an Over The Road truck driver (Yah-you sit and stress for 11 driving hours, eat and snack then sleep for 10 hours) doesn't make for staying trim, so I have always had an exercise regiment to follow in the truck.

My problem with eating started during the 4th week, by the way, and discovering acetamynophen really helped alleviate throat swelling on the 5th week made the difference.

Just 2 days back into exercise mode-and no, I'm nowhere near my activity level-I already feel more energetic.

By the way-the old formula of multiplying your weight x 10 (in pounds) and adding about 400 calories does come close to calories needed to maintain my cancer patient weight.

I mean-how many calories does one need to to from the couch to the kitchen to the loo and back to the couch? 😁.

Last week of Radio, 1 more Chemo. Do whatever it takes to get through each day and remember to smile because this is harder on the ones we love that it is on us...

Re: Not As Bad...as I feared

Azjoetrucker — Tue, 14 May 2019 21:27:04 GMT

Joe, Bugzapper...how are you doing?

Re: Not As Bad...as I feared

Bugzapper — Wed, 15 May 2019 00:49:38 GMT

Hiya... I'm loving your description of your journey.. So far the mouth soars are here and very painful... None down my throat though so I'll take that for as long as I can. Food is such a dissapointment.. Can't really taste much of anything. Which really sucks cus I love food. Would need to over salt but I've got high blood pressure now and they've told me to lay off.. Obviously. Those mornings are hard to deal with when the swelling in my mouth and the stringy stuff is impossible to navigate through before the Advil kicks in. I seem to be maintaining my weight.. Only about a pound a week is lost. I'll be half way through by this Friday and I'm in for chemo number two tommorow.

So exciting to hear your so close to the finish line. Saw a woman today ring the big bell /gong thingy at the hospital today.. She was done her treatment and I just started crying.. So happy for her... Can't wait to be that girl

Re: Not As Bad...as I feared

Bugzapper — Wed, 15 May 2019 02:50:14 GMT

Re: Not As Bad...as I feared

Bugzapper — Wed, 15 May 2019 02:52:58 GMT

Dear David... I guess we all breath the same air... But your decision-making seems to be beyond my reach. I hope for the best for you... Are there anymore answers your looking for from the doctors or has it all been pretty cut and dry?

Re: Not As Bad...as I feared

Azjoetrucker — Wed, 15 May 2019 12:40:49 GMT

Great to hear you're hanging in there!

My 4th to 5th week was the beginning of Hell Week for me so I hope it'll be different for you.

I found that Shrimp-the precooked and pre shelled kind, went down real easy with various sauces. You know I'm a bit extreme, so I'd microwave the shrimp in lime juice and dip them in various garlic or other sauces depending on mood.

I know that dairy goods are anathema to us Mucosa Downtrodden, but when the throat slashing was extreme for me, shakes were the only 300 plus calorie drinks I could stand. My favorite is 6oz milk and 3 generous scoops of Blue Bell ice cream.

Once you get through this chemo and rad affair, you might want to check into using Apple Cider Vinegar to control your blood pressure.

My next battle is with Kidney Disease, which gives me high blood pressure. I started using Apple Cider vinegar teaspoon twice a day and it helped crash my bp to levels that allowed me to pass my Trucking medical exam. I swear by it.

I've got now two more Zap Sessions and one more Chemo. Though my throat feels better I've been feeling more exhausted after each session.

I did begin to do situps, pushups, squats and half hour yard work...but still going easy.

I'll let you know how it goes. But know that One Did Fly Over the intuber's Nest and so can you!

Re: Not As Bad...as I feared

Azjoetrucker — Thu, 16 May 2019 18:54:44 GMT

Rang the Bell.

Last day of Radio and I'm looking forwards to regaining use of my throat...or at least being pain free.

Like the Grateful Dead should have sung, "what a long, Painful Trip its been" (ok, ok they should have sung that...).

I am proud, and thankful, of having made it through without sticking a feed tube...but I'm sure it would have made the whole experience less painful.

One more chemo on Monday and then, hopefully, this chapter will be closed.

Hell of a way to quit smoking! And just think-all that money I'll be saving for the next few years will go to paying bills for Cancer Treatment. Geez.😉

Find strength at the lowest times because this too shall pass.

Re: Not As Bad...as I feared

Azjoetrucker — Thu, 23 May 2019 19:48:17 GMT

Hey Bugzapper, how are you faring?

Today is a week out from my last RadioZap (3 days out from last Chemo).

No real changes energywise and throat still delicate...mouth, for some reason (yah like eating Tortilla chips) once again sore.

Got a nice bottle of California Cavernet Sauvignon to celebrate but mouth & throat refused to join in...

Hope all's well.

We'll get through this.

Re: Not As Bad...as I feared

Bugzapper — Thu, 23 May 2019 20:38:47 GMT

Well.. Just passed my half way piont.. Feeling good about that and the fact that I still have not had the GI placed!... On all accounts my team say I'm doing remarkably well... Lost a bit of weight between visits but the Dr's aren't too concerned because my energy is good and I'm no emaciated. I'm 6 feet tall and started out maybe with some "bonus weight" lol.. So if that's all I've lost then I'm still a head of the game. Food is such a bore.. Can't taste a thing and I'm desperate for flavour... Ears are ringing and some sounds can be overwhelming.. They say that's the chemo doing all it does to our bodies.

Overall I'm alright but getting tired of the daily grind.

So huge congrats to you on the completion of treatments... That wine will keep!... But I'm sure there's much more where that came from... Maybe visit the vineyard and stay overnight!

Re: Not As Bad...as I feared

Azjoetrucker — Thu, 23 May 2019 22:55:10 GMT

Hear Ye! Hear Ye!

Glad to hear you're hanging in there. I found that the herb Cilantro (its a Latin thing-wonder if you can get it down under...) Spices up lots of the old bland stand bys without salting.

Uh yeah I'll make sure I hit Napa Valley in California once i keep On Trucking!

Regards- joe

Re: Not As Bad...as I feared

Bugzapper — Fri, 24 May 2019 00:22:41 GMT

Plenty oh cilantro in Canada... That's where I am.. Funny, thought you were in Australia too... Lol. If you're in the states, Yes!!!.. Napa all the way.

Take care.. Keep on truckin