IVa HP16 SCC

OregonSCC,

Welcome to the H&N forum fellow Oregonian, so sorry you picked up on aisle IVa, scc, hpv+. 

I traveled a similar path but only had to drive 11 miles to Corvallis for treatment. 

I was trying to think what was the most recreational about treatment and I guess I’d have to say the radiation treatments, watching the machine move around me.  I never liked it but came to appreciate it.  While each of us have different side effects’, eating has been described on here in many ways but never as recreational.   Eating after radiation is something you have to develop a taste for.

I had a PICC line, it worked okay but itched like nobody’s business.

I  had a PEG tube (twice) but in hindsight could have done without.

A second opinion is often a good thing but the outcome is probably the same treatment plan.

It is kind of too late for supplements to help, now is the time to consume calories, that is if you follow the normal plan and lose about 50 pounds from treatment,  Good nutrition is important too.

Laughing with you,

Matt

Welcome to the club. 

1. I had a port. It was not bothersome at all and a great way to have blood draws and extra fluids as well as chemo and contrast dyes for scans.

2. My treatment was at a smaller cancer center. Just make sure your doctors are using current protocols and able to offer them to you. 

3. It sounds like your doctors are using a team approach which is good. Many insurance companies let you get a second opinion. It can't hurt.

4. I am a Type 2 diabetic in Stage 3 kidney failure. My docs used kinder-to-kidneys contrast for scans and Erbitux rather than a platinum-based chemo drug. You'll need to closely monitor your sugars if a steroid is part of the chemo delivery. Good hydration is important for your kidneys, too.

5. Eat a balanced diet for as long as you can. I did not have a feeding tube but lost 40 lbs. As you need advice, people on this site will give you ideas on food  preparation and how to deal with treatment side effects. 

Check with your hospital and insurance company about financial help too. We'll all be here to get you to the other side where you will meet our friend NED. (No Evidence of Disease )

that nobody wants to join.  I can tell you that having a sense of humor helps a lot with this diagnosis and treatment, and you have that in spades....GOOD!!!

I had a port....so I'd want to ask how long will getting one delay treatment?  2 days?  A week?  I can't imagine it would be longer than that, and therefore wouldn't make any difference.  If they say 2 months, somebody's pulling your leg.  The port was great, no hassle, no fuss no muss for showers, or blood draws, or getting chemo.  I did have a tube....and wouldn't have made it without....I was skinny to start, and skinnier at the end, but only lost 20 lbs all told. 

I went to the Medical Center right here in Kalispell, Mt.  It's small compared to places like Seattle, or MD Anderson....but my treatment was the same as it would have been elsewhere.  I'm 3 years out and none the worse for wear, considering.  They used the team approach here, just like the big centers.....ENT, Oncologist, and Radiologist....all working together.  A second opinion is a good thing to have, tho.  A one time trip to Seattle wouldn't offset your treatment much.  If they have a different approach, your Oncologist in your own town might be willing to follow it.

The above I'm thinking because of your kidneys....Cisplatin can be hard on them, where Erbitux would not be.  I got a drug daily that was supposed to protect my saliva glands from radiation, but it also protects the kidneys (Amifostine).....ask about it.  Walking in with knowledge lets them know you are up on the alternatives out there....that everything doesn't have to be cookie cutter.  Just ask...."what about Erbitux because of my kidneys?".....see what they say.

This group is great....the knowledge, support, and humor found here, will get you through this rough patch of life....we know tips and tricks to make this more doable.....more tips and tricks than the Drs. know (having never been through the treatment they dole out)....We'll tuck you in our pockets and help you through this!

p

wmc said:

Welcome to the H&N Group

Welcome Bob to the group. As of now you are not alone in this journey you are going on. It is a rough road you are about to go down, but many before you have been down it and will smooth it out the best we can. As for me I was T4; N2; M0 going into surgery but once they were in, it was reduced to T3; N0;M0. I didn't have chemo or Radiation so the others will help you with that part. They removed my larynx and did a neck dissection on both sides, removing 86 lymph glands.

Having a second opinon is alwasy good to have and If you need to go to the hospital 300 miles away they can make arangments for you to stay their at very reduced, and even no charge at times to be treated. If you want to stay local they can get with them and let them know what is to be done and where the radiation is to be. Stay hydrated and expect to lose weight so you might want to pack on some calories.

Bill Oct 2013

Hi Oregonian

You really sound like you are making good sound decisions and wanting to be educated. Sorry about the diagnosis. Welcome to the Board. I had to go look up what a PICC was. I had a PORT.  I don't think it would matter much if it can deliver appx the same flow rate for chemo. It sounds like it's even less prone to infection. Other than chemo most nurses avoided it because they didn't know how to access it. I suppose it's an uncommon device. There are contact points under the skin that need to line up with the port thingy. Anyway I doubt it matters much. I wouldn't change much. I was treated at a local rinky dink hospital for chemo and radiaition. My local GP was on staff there. The  radiation machine would break down almost weekly and there was usually a computer tech guy  hanging in the hallway in case it went down. I had the two most knowlegable rad and chemo doctors as well as a staff dentist experrienced in head and neck cancer. Some of the most caring people I have ever met and fifteen minutes from my front door.  All this stuff is flow charted and standardized. Chemo is easy to order and adminisiter anywhere. The radiation is mapped from your CT/scan/PET and the dosages regulated by frequency and intensity. We all generally get between 35-40 sesssions at about 70 grey. You get treated first and worry about payment later.  You are not missing a thing by staying local as long as they follow protocol, meaning tumor board recommendations. If you need specialized surgery then it's OK to move to the best capaple facility. There are countless threads here about feeding tubes and no feeding tubes and individual experiences. Someone has already mentioned starvation, it's a fact with 1/3 of all cancer patients dying of malnutrition. That again is all cancers combined and not just us. The general plan is to consume  massive amounts of caloreis now as you will lose weight. There are medical grade supplements available for every need. Seems to me you have been lucky enough to come accross a competent little treatment facility. They exist , go for it! All the best.

Oregonian_squamous said:

Thank you for all your

Thank you for all your comments and suggestions. I will look into them and ask lots of questions. When my treatments start I will probably lean on you heavily.

The great thing is that my wife and I have been through another serious medical issue for her. I know she and others will be willing to help. A friend of mine said I should put together a team of people who may be able to help with various chores during treatments: transportation, food if needed, outside and inside the house things, financial counseling, etc. I thought it was a good suggestion.

By the way, does chemo make you emotionally crazy? While I'm doing pretty well today, I am a pain wuss (Honey, I've got a serious hang nail and it looks like it might bleed. Gonna have to stay home from work today). I may whine a bit. I know I'll get tired but I'm already a nap fool.

With the radiation I have read that it could effect (affect?) my throat, temporarily and/or permanently. Please tell me it will be temporary. I play guitar and have a fairly pleasing voice  for an old man.

I know this may/will be trying, but I also know this will be an opportunity to grow as a loving person (My sponsor said that was his purpose in life. That was what I needed and now strive for.)

Life is good today.

emtionally crazy, unless a person is looking for a reason to be...then it's a good excuse....LOL.  Chemo can make you nauseated, weak, sleepy, tired....drugs for the nauseated, rest helps the other stuff.  It is a good idea to have helpful hands on deck.  I had my husband and my sisters.....hubby drove me to and from chemo and rads, did the lawn work, and took care of dogs and horses.....sisters did all the cooking for my husband, and made things I could eat/taste.....mostly homemade soups.....it was a godsend.

As for your voice....there are several musician/singers on here.....their voices changed a little, but they seem satisfied with the outcomes.....yours will too!!!

Adversity makes us grow....if you have a sponser, then you know that's probably true....Pain is the touchstone to change (or so my sponser has told me )....that seems to be true so far!  I am different now, than I was pre-cancer....some days it's good, and I remember one day at a time....sometimes I take up my old habit of peering off into the future....that makes for a stinky day.

p

Oregonian_squamous said:

Thanks

Luckily this week has been much better. The nausea is much less than it has been. I was able to go back to work part time. I wrote the post when I was pretty low. Doing much better now and I think I saw a balloon. Thanks for the prayers.

Mike

Glad to hear you've gotten back to work....it gets better every month and that's a fact (slow I know, but better, none the less).

p