Start chemo and radiation monday 11/9...Any advice?

(Please only share positive encouraging advice...Thanks)

On Monday 11/9, I begin radiation therapy and Friday Chemotherapy. From my understanding 35 treatments of Radiation and 4 treatments of chemo with Cisplaitin & Taxetere every 3 weeks. We are also tryng Ethyol prior to the Radiation.

Any feedback on eating, pain, soreness or etc.

Thanks, Zachary

Well, Zachary, you've got a tough road ahead of you. I had the same treatment as you, though I didn't have Taxetere or Ethyol. I'm sure plenty of people will chime in with recommendations, but I'll start.

If you don't have a PEG (feeding tube) already, I would strongly suggest that you get one now (as in NOW). I know, there are people out there who went through this just fine without a PEG, but for others it is literally a lifesaver. There's no way to predict how your throat will react to the daily onslaught of radiation, and better to have a PEG and not need it than to not have one and need it. You don't want to have one installed when you're already feeling crappy. Better to get it done now.

The other thing is, unless you're really very overweight, put on weight now (as in NOW). Enjoy food while you can, live it up, because pretty soon it's not going to taste right and your throat is going to be sore. And believe me, if you think you know what a sore throat is, well, you don't. I used to weigh 190. It's been 13 months since my treatment ended and I now weigh 155.

That said, you can get through this. Me, I was blessed. Yes, the experience sucked, but I made out a lot better than a lot of people have -- and I honestly think I emerged a better person because of it. I'm a hard-assed newspaper reporter with 30-something years of experience. I've witnessed executions and slept like a baby that very night. I've seen more human tragedy than any one man ought to -- but going through all of this has changed me for the better. I'm almost wise enough to thank God for putting me through this crucible and forging me into a new man. (But it sucked enough that I'm not quite willing to do that just yet. Ask me in a year or so.)

Above all, keep a positive attitude. Keep your faith. Keep your loved ones close, and ask them to be understanding when you're having a rough go of it. And be sure to consult people on this board when you have a question or concern. There are good people here.

Good luck, and please check in regularly.

--Jim in Delaware

Hi Zachary,

A few of my experiences...

The ability to eat normal food went pretty fast. It wasn't just a loss of taste - most foods were just plain repulsive.  I eventually found I could eat 3 identical meals a day:  egg and cheese omelets (with cut up ham inside), with a little tea (and honey) and 2 Boost Plus (about 2700 calories per day, if I recall correctly).

My throat slowly got worse and worse, so I took a codeine-tylenol mixture, and used magic mouthwash just before eating to help get my meal down.

Water and gargling with a salt/baking soda mix were very helpful for general maintenance of hydration and to help control mouth sores.   I got thrush a couple of times and took antibiotics for that.  I got canker sores, and used an over-the-counter medicine for that.  I got pimpes very badly from Erbitux, and took antibiotices and steroids for that.  I ended up getting very constipated, and nothing really helped much so I just did enemas at the end.  I took nausea medicine - the first one I tried didn't work very good, but the next one (Zofran) was quite good.

I did weekly chemo with Erbitux and Cisplatin - on Wednesdays.  So I felt fairly bad by Friday, but nothing horrific. 

I also took daily Ethyol shots - rotating arms daily.  I had no big problems (the Zofran helped, I think) with it, although my RO advised it would be the first thing to go if I started having trouble.

I exercised daily - light weights and some easy cycling, as well as walks with my wife (who did a great job as my caregiver).  I did neck stretches daily (I had a modified radical neck dissection), which I still do three years post treatment.  I did and still do daily mouth opening stretches, since trismus is possible due to radiation therapy.

I did not have a PEG, so my RO monitored my weight very closely, advising I would get a PEG if I started losing weight.  I lost maybe 5-10 lbs.

My advise:  find simple foods that are palatable and have lots of calories in small amounts (since it's not the most pleasant experience to eat); deal with every ache and pain by getting a medicine, and if the first one you get doesn't work then get something else until you find what works - don't let pain or nausea linger; keep active as much as possible; get a caregiver if possible, who will look out for you (sometimes we are are our own worst enemies when it comes to asking for help); keep your mouth as healthy as possible (you should be getting flouride trays or a flouride regimin); stay hydrated.

For me, it was very unpleasant but not horrific.  Hopefully your experience will be similar. 

So, here I am three years later - I'm in great shape, I feel great, I eat well, I have pretty good saliva (swallowing can be a little difficult).  I will be doing flouride trays twice per day for life and I now take thyroxin since my thyroid has slowly faded.  Neither of these is all that difficult.

Best wishes,

Chris

Eat everything you like over the weekend and as long as you can stand the taste and can swallow well enough. Indulge yourself with all your favorites. Consider a PEG. Drink a lot of water and if you can't swallow, put a lot in your PEG. Consider protein and probiotic supplements that can be put down the PEG if you can't swallow. Use zofran and benadryl an hour before the ethyol shots. Rinse with baking soda/water solution. Get a really soft toothbrush from nimbus (online), consider non-mint toothpaste from cleure (online) because mint might hurt (10 months past treatment I still have trouble with mint burning). Ask your doc for magic mouthwash when you start getting sore. Ask about suggestions for the neck burn - there are numerous creams available and if you look through old posts here you'll find specific names. Watch funny movies. Indulge in massages. Give yourself permission to rest as much as you need to and know that most of what you will be encountering on this journey will pass and the rest you will adjust to. Blessings to you. That's all I can think of right now.

Hey, Zach......

Forgot to mention slippery elm tea with raw honey..... Couldn't fine pure slippery elm tea, but bought tea called Throat Comfort Tea....I think at Sprouts.  The advise that you have received so far is good........I'll talk to you again next week!  You are going to be FINE!!!!!!!!

Steph

Hi Zachary:

And why would we be anything less than encouraging? :)

I'm two years out of treatment now and most of the effects of radiation and chemo are distant memories. My treatment plan was pretty close to yours - 6 weeks of radiation (4 weeks 1X per day, 2 weeks 2X per day plus 2 rounds of Cisplatin about 3 weeks apart). As of this Thursday, on physical exam, my doctor declared me healthy if not wealthy! Have a PET scan lined up for next Thursday and we don't expect any surprises.

So if anything, look past the treatment towards the day when you're cancer free!

You'll face some nutrition and fatigue issues while under treatment. The radiation especially will beat you up. A PEG tube (feeding tube inserted thru the abdomen directly into stomach) was recommended for me and glad I took the option - the inflammation and pain in my throat prevented me from getting food down.

You're going to need to focus on getting calories in while under treatment. Probably more than you're used to taking in since the treatment itself burns up quite a few. You should have a nutritionist on staff that can give you specific guidelines based on what you can eat. If it's solid food, get down what you can. If it's the use of the PEG tube, try to set up a schedule for specific times to "eat" since you're probably going to lose your appetite.

Also very important - hydration! You must get in water - buy the bottled water and keep sipping (or PEG'ing) throughout the day. Try to use up at least 3 bottles per day - keep count! Dehydration will knock you out faster than the radiation.

Get your rest whenever you can. Sleep is a restorative. Most likely you'll be provided pain meds, etc - but sleep is the best medicine you can provide.

And as far as pain goes - I didn't really have any so didn't need to take advantage of the pain patches, pills, or liquids provided.

Keep your mouth clean with rinses and toothbrushing. The radiation will cause some cavities down the line but good oral hygience will keep them to a minimum. If you can eat solids, several teaspoons of yogurt a day will stop any thrush infections you might get.

You might feel like you have a terrible cold with stuffiness and congestion. I used - and still use - sinus rinses. Some use a Neti pot. I use the Neilmed sinus rinse packets with the squeeze bottle. Feels wierd at first - but helps to keep the stuffiness down and I think reduces some of the inflammation.

Surround yourself with friends, stay in touch with people - they'll be your greatest source of strength. It may seem trying at times - but you will get it thru it. Have patience - it will be your greatest virtue and remedy!

Stay in touch with the forum - lot of experience and help here.

Best of health to you and hope for a quick recovery and clean diagnosis!

- Jeff

feeding tube,a feeding pump ,a port for injections , home hydration which is getting set up to give yourself IV fluids at home thru your port. Pack on the weight now EGGNOG!!!!

Keep asking questions...

The more fluid and nutrition you get in you the better you feel.

Hi Zachary,

You got a lot of good advice in the previous posts.  I will simply add some things that helped me though radiation quite a bit.

Check this site as often as you can during your treatment. It is so, so helpful. Post as often as needed, read as much as you can.

Use the cream the radiologist suggests for your neck, as often as you remember.  At least double their suggested amount.  I was told at night would do it.  But I never left the parking lot after a treatment with covering my neck in a coating, watching TV or on the computer I coated my neck and then to sleep.  I got only one small burn the whole time, and it was painful.  So apply and reapply the cream.  ONLY USE WHAT THEY TELL YOU IS OK, some can cause adverse reactions to your treatment.

Stay hydrated, even when you feel you don't want to, drink as much water as you can and then drink some more.  It will keep your swallowing relexes working and keep you out of the hospital for dehydraton.  I've read of too many people who spent a night or two in the hospital for fluids, I think you can prevent this if you just force yourself to drink.

You asked for positive encouragement, well  I did it ALONE. So if you even have a neighbor/friend/family member to help you are already well on your way. You can do it....post often, private reply me anytime.  Best to  you, Debra

On Nov 06, 2009 8:47 PM Zachary wrote:

(Please only share positive encouraging advice...Thanks)

On Monday 11/9, I begin radiation therapy and Friday Chemotherapy. From my understanding 35 treatments of Radiation and 4 treatments of chemo with Cisplaitin & Taxetere every 3 weeks. We are also tryng Ethyol prior to the Radiation.

Any feedback on eating, pain, soreness or etc.

Thanks, Zachary

Zach,

As said above, get  a PEG tube and good pain meds when it hurts and magic mouthwash.

Strangly you might think some more practical advise from a head and neck cancer patient who had surgery early 2008 and then radiation/chemo 7 weeks 35 radiations: 

What advise has been left out.  One, the God of the Universe  will give you grace sufficient to meet each day and loves you more than you can comprehend-so much he sent his only son to die for us.

Jesus will know any pain that you have.  He was whipped 39 times, wore a crown of thorns, was mocked and hung on a cross for 6 hours supported by nails driven thru his hands and ankles/feet.  I say this so that you have one powerful big brother-one who will listen to you at 3:00am...who will never dismiss you or tell you cliches...one who will give you an inner strength for this Fight if you only ask.

You have a Holy Spirit, your Champion, that will be by your side throughout this journey...24-7-365  if you only invite....every cry...every frustration...will be shared and the Spirit is a Source of Tremendous Fire Power..I mean Kick Arssse Power....and you will feel it Zack.....if you ask for chemo...if you have faith in radiation...go out on a limb and take a chance on your Heavenly Father, your Big Brother and Savior Jesus and the Holy Spirit that can kick any MMA butt,  And finally, in heaven you have your own cheering gallery-the Hall of Famers-the Saints...many of them died horrible deaths like stonings, eaten by lions, burned at a stake, beheaded....why do I say this Zach.....because they too know your Fears, your anxieties, your frustrations, your fatigue because they were just like me and you.

So take the above on your Fight.....35 rounds...you can and will do this and you will be cured...but if you show faith in medicine which you can't see, you have to have faith in the man Jesus who was just like me and you (as well as devine of course) who hung himself on a Cross and rose just for me and you-all you need to do is say "Help Me Through This-help me get through this day" and I promise Zach at the end of your last treatment your life will never ever be the same.

Ask me any questions 24-7-365

One day at a time, one week at a time and be kind first to yourself and then to others.  Save all of yur emotional energy for your treatments thinking confidently and believing in the very best.

OUdave

PTL! You are right on.

Thanks,

Zachary