About to begin the Journey

My Fish is Bigger Than Yours....

Oooops.I mean Greg's..., LOL.

Welcome T, and ummm...hang on for the ride.

Like mentioned, don't be that concerned with odds and statistics at this point...way too many factors controlling those numbers.

I was STGIII SCC Tonsils, and a lymphnode..HPV+. They took out the tonsils, did the famous nine weeks of Cisplatin, Taxotere and 5FU, then your schedule of seven weeks of concurrent weekly Carboplatin, and 35 daily rads.

For me (and comparing your MD's comments), the tonsils were far worse than treatment.... It was just intense and a week or so long. The rads recovery is much longer, and less painful.

But you can at least somewhat eat and taste with the tonsil surgery.. Taste and saliva are out the window for several months with the rads.

I did have a power port (two plus years worth), but no PEG.

I switched over to mainly Ensure Plus mid-way through and a few weeks after rads..., less pain, more bang for the buck calories wise..., plenty of water, and a few sliced peaches to keep the throat muscles working, and drugs, LOL.

Also, the unkown primary...several here that have went that route too.

BTW;

My fish is bigger than yours, LOL...

One of the original founding members of the "Abi-Normal Clan"...

Oh, and BTW..., my original Dx and Tx was in early 2009...clean and clear since... Hang in there, maintain and positive attitude, keep your humor, and that'll cover at least 50% of your success.

Best ~ John

 

fishmanpa said:

Nice Fish!

Hi John,

Thanks for the note. I've been hearing a lot about the reading and the statistics. I realize now that I'm "me" and not a number. I'm also hearing a lot of that "hang on" verbiage. My Dr. said this will be worse than the sore throat from the tonsillectomy. But then I had biopsies done too and that added to the pain. It's the energy level and unexpected setbacks that concern me the most. I want to work (desk job speaking on the phone). I need to work both financially and mentally. When I'm busy, I'm not thinking about "Jack" or how I'm feeling. My work can be somewhat fast paced and that's a good thing but I do have lulls in the action. 

Many have stated to have a plan B in case of that but I don't know how to even begin to do so. Right now I'm just pissed about all of this. I want to kick Jack's behind for butting into my life. 

Good news is I got the go ahead for a 2nd opinion at Johns Hopkins for this Friday. They'll be going over all the pathology reports, samples etc. They'll be checking again for HPV. I want to be sure what I'm about to do is the best way to approach this and they're one of the best in the country. 

They're currently scheduling the treatments locally. I suspect I'll be starting next week. I tried Ensure (YUCK!) ~lol~ I plan on mixing my own with whey protein, glutamine, aminos, flax or fish oil and vitamins along with fruit for carbs. As it stands now, I won't be doing the port or the feeding tube unless I need to. 

That is one heck of a fish! I do mostly fresh water. I live in the Shenandoah Valley and the Shenandoah River and streams have some great fishing and some of the best scenery in the country. The streams are stocked year round with trout and there are native brookies as well in many of the mountain streams. 

It's encouraging to know so many have done so well. I plan on being one too! 

Thanks again and here's to hooking up with a lunker!

Fish On!

"T"

 

just wanted

to welcome you to the group, good luck with your treatment and recovery...

Dad says "Hi"

Hello,

I write for my Dad (maybe the oldest member???) at 94 he is being treated with radiation only for floor of mouth SCC.  You are at the right place.  You will read about ideas, tips, tricks, and good ol' fashioned motivation to keep you going.  You'll soon find a core group that will only have your best interests in sight.

 

They are here and they care.

 

-V

fishmanpa said:

Nice Fish!

Hi John,

Thanks for the note. I've been hearing a lot about the reading and the statistics. I realize now that I'm "me" and not a number. I'm also hearing a lot of that "hang on" verbiage. My Dr. said this will be worse than the sore throat from the tonsillectomy. But then I had biopsies done too and that added to the pain. It's the energy level and unexpected setbacks that concern me the most. I want to work (desk job speaking on the phone). I need to work both financially and mentally. When I'm busy, I'm not thinking about "Jack" or how I'm feeling. My work can be somewhat fast paced and that's a good thing but I do have lulls in the action. 

Many have stated to have a plan B in case of that but I don't know how to even begin to do so. Right now I'm just pissed about all of this. I want to kick Jack's behind for butting into my life. 

Good news is I got the go ahead for a 2nd opinion at Johns Hopkins for this Friday. They'll be going over all the pathology reports, samples etc. They'll be checking again for HPV. I want to be sure what I'm about to do is the best way to approach this and they're one of the best in the country. 

They're currently scheduling the treatments locally. I suspect I'll be starting next week. I tried Ensure (YUCK!) ~lol~ I plan on mixing my own with whey protein, glutamine, aminos, flax or fish oil and vitamins along with fruit for carbs. As it stands now, I won't be doing the port or the feeding tube unless I need to. 

That is one heck of a fish! I do mostly fresh water. I live in the Shenandoah Valley and the Shenandoah River and streams have some great fishing and some of the best scenery in the country. The streams are stocked year round with trout and there are native brookies as well in many of the mountain streams. 

It's encouraging to know so many have done so well. I plan on being one too! 

Thanks again and here's to hooking up with a lunker!

Fish On!

"T"

 

Once you begin treatment

it is absolutely imparitive that you run anything you're putting into your body by your Oncologist.  That means the smoothies you're planning.....antioxidents are a total no no.  Weird I know...but the rad doc explained to me, that just like they help your good cells fight disease, they also help cancer cells regenerate.....working against the radiation you're getting.  Just promise you'll take your recipie to the Dr. first, ok?

p

PS...yup Ensure tastes like crap....however, once you start treatment, you can't taste it anyway.  When your throat is really sore, knowing you're going to get 550 calories in only 8 to 10 swallows makes it a nice bang for your buck.

Work...

I'm not so sure how your throat is going to hold up say mid-rads to a few weeks after if you need it for work...

But doing computer work or office work in general is very doable in some cases.

For me, I mainly do all computer related work in office. So I was allowed to work from home and connect to my office computers. I did that all of 2009 through August, going back in office after Labor Day 2009.

I didn't miss any reports, projects or deadlines...

But it wasn't a typical 9 - 5, I had dates and times that I need to have work done. So I am liberable enough to work when I feel like it and rest when needed.

On chemo days, pumped full of roids, I might start work in the evening and work all night, resting the next day..then return to the daily routine unitl next chemo session.

The rads will start zapping your energy...or more so the lack of energy from reduced calorie intake and energy to recover.

So drink a lot of those Ensures or energy drinks... Just remember, it's nothing to do with taste or pleasure... It's strictly calorie intake and hydration...nothing else. You can try healthy solutions whatever, but for me, you have to get in calories and hydration...worry about the other stuff after you survive treatment.

BTW, there are a lot of healthy solutions and food related links on the SuperThread.

Best ~ John

fishmanpa said:

I know one thing!

Hi John,

 

I know one thing... I won't be singing for a while! My goal is to be ready to perform by May. If my treatment is done in early March that should be doable (I hope!). I speak on the phone for a living. I'm essentially I'm the voice for the company, guiding customers through the process of manufacturing CD's, DVD's etc. Fortunately, this is a slow time of year. I take maybe 20 calls or so a day. I can deal with horseness. A whisper for a voice won't work. I probably could work from home but I like being here believe it or not and I need the distraction  

From what I'm hearing, I'm gonna feel it right after the treatment and it will only worsen as time goes on and even afterwards for a while. My plan was to get my rads first thing in the morning at 7:30 then go to work afterwards. My chemo is going to be on Fridays and will take a couple of hours so I'd be in at around Noon or so (later if I need additional IV fluids). Also, Fridays are the slowest day of the week so if I'm really hurting I can take the day off. My employer is very supportive.

I'm already experiencing a loss of appetite, mostly from stress. I've lost about 20 pounds since October between the heart attack and the tonsillectomy but I'm still a solid 212 @ 5'10". I've already started supplementing with the shakes. My primary physcian said not to worry too much about the low fat heart healthy regime during treatment as I'm going to need every bit of energy I can get.

As far as hydration... I really like the Powerade Zero drinks. Basically flavored water with B vitamins and eletrolytes. I know I won't taste it soon enough but any feedback on that?

I've been checking the Super Thread and indeed, it's chock full of info. I also had my partner join the site. She could use the info and support on the Caregivers thread.

I truly appreciate all the kind words, advice and info. I'm glad to have found you all!

"T"

might help

T,

 

I can buy you your afternoons (maybe).  Learn to wear the mask without anti-anxiety meds.  I never did like the mask, but with 1 Lorazapam we could co-exist for 25 minutes a day.  At least being on meds let me equit freaking out and instead checkout the room, count to 280 (start zap), listen to music, watch the line-up lasers, etc.

 

Hey that is a big plus for you, music, pick something that makes you want to get up and work after your morning zap.

 

Truly the best of luck,

 

Matt

fishmanpa said:

The Mask

Hi Matt,

Ugghhh... the Mask! That was a very unpleasent experience getting fitted. The only issue I have (and maybe once it's hardened it won't be the case), was being able to breath easy. I'm going to see if I can spray my nose with Afrin or something so my nasal passages are clear. If I can put some ear buds in and listen to music it'll make the time pass quickly....we'll see.

Thanks!

"T"

 

mask time

T,

 

Ear buds are most likely a NO!  Most have a music system, if not ask if you can bring a player of some sort.  I listened to 60’s & 7’s (oldies) rock.

 

Breathing sometimes seems harder than it is.  Relaxing is the key, for me it was drugs, for others it is no big deal (bless their powers).

 

The music really does help sooth the brain during this moment of over stimulation.

 

You will do fine, just ask.  My technicians were my buds; they were extremely kind and helpful.

 

Been there,

 

Matt