One down and 34 to go (IMRT) and 2 to go (Cisplatin).

No issues or complaints; just wanted to lodge a post here and refer back to it as the weeks count down. And of course if any issues that I want opinions on arise.

I really feel like between all of you here already and the doctors and nurses telling me what to expect and giving it to me straight that I'm as ready as I can possibly be. It is a great gift that you here have given me. Courage.

Let's do this!

Paul

Good luck Paul. Hoping you have an easy time of it.
Keep swallowing. Maintain the calories and if you need pain relief ask for it and take it.
We will all be here to help if you need.
Tammy

Your positive attitude is your best support through the trip. Don't be shy when you get some side effect and want some tips from the trenches. Good luck

At least you have started and now you are walking towards that finish line and we will be with you the entire time.

Paul, you're part of our family and we're all here for you. There will be challenges ahead, but I know you'll meet them with guts and an upbeat attitude. Whatever you face along the way you can be sure one of us has been through something just like it. So don't be afraid to ask any questions here, no matter how trivial they may seem to you.

Hang in there, buddy.

Please dont hesitate to post often and ask questions as you go thru the next few weeks. We will help you as much as possible.

Keep your focus on your intake. That will help you get thru it easier. Every single day hit the minimums of 2500 calories and 48-64 oz of water. If you can do more, thats even better and will only help. Dont worry about gaining weight, most of us lose weight even when taking in 2500+ calories daily. Swallow every single day even if it hurts.

Hang in there, we are in your corner all the way.

Thanks everyone!

So I'm starting Day 4 now. On Day 2 I awoke with pretty strong nausea but took the Compazine and lay back down and felt better. Later in the day I got the wildest bout of hiccups 3 different times. They haven't come back and I also got a prescription for Prilosec because I was complaining of a little heartburn.

On Days 2 and 3 I was noticeably tired. I took time out to grab a nap when I could and went to bed early. Hard to gauge how Day 4 will go but I don't think I'm quite as tired out of the gate.

Appetite is good, I'm eating well. No ill effects I think from radiation treatments yet (there have only been 3 of them; fourth this afternoon).

The hiccups can be from the decadron (corticosteroids), infusions given with chemo. There are meds for that, if it becomes a problem.

Keep up the good work!

Kris had wicked, relentless hiccups after each chemo.
They went on day and night for 2 weeks. No meds stopped them. Not pleasant.
Hope day 4 went well.
Tammy

Had been a little worried about how listless I was becoming already but on Saturday I kind of rebounded and I had a very long and fulfilling day on Sunday. Got a good night sleep and feel pretty normal this morning on Monday. Going to be able to get some work in. So I'm hopeful of another couple of good weeks without being/feeling so tired and listless before I start chemo again. Feels like I may have turned a small corner.

Taste is becoming noticeable but not really a problem. Just food and drink beginning to feel more 'meh'. But I'm not having any troubles swallowing and taking in nourishment and calories. I go back for a check-up with the chemo doc this afternoon before rads and I'm sure we'll have things to talk about.

Just want to acknowledge the great and unfailing support of you folks here. My friends and family (through a caring bridge site mostly) are very complimentary about my spirits and my knowledge in the face of my situation. I know that I owe a huge part of that to the folks here now and before me.

Paul

Paul the only thing I'd add to what the others have said is to stay in close touch with your doctors and nurses. Some weird things are going to happen to your body that are going to redefine words for you. Be aware of all new symptoms and don't try to tough any out. Nausea, constipation, hiccups, tinnitus. Keep the bowels and kidneys working and keep those calories up.

Every journey is slightly different and everyone reacts differently. Hope yours is a smooth ride.

Over the weekend I had a big switch in terms of symptoms.

No longer producing no saliva I have go into saliva over-drive; the thick stringy stuff.

Throat now very sore. Painful to swallow. Contricted.

Constipated (though did have a bm just now this morning); may have been causing the extra-queasy feeling of late?

As I write this Tuesday morning I'm generally feeling a bit better. We upped my Prilosec and maybe it made my throat feel a little better. Like I said I had a bm this morning following some 'emergency' magnesium citrate last night. And when I took some vicodin last night it did help the throat pain.

This morning also my saliva problem seems a little better. Maybe also the Prilosec?

Weirdly comforting that I'm moving on to the 'next phase' as I can start to count down the days this (throat, saliva) will be over. I know it will be a while but it's part of what everybody has been warning about so...

Spirits high. #Courage

Paul

Hi Paul - I had to add a stool softener capsule to my daily intake; that helped keep things moving. It was when I forgot it I would realize a day or two later my mistake.

I lost all taste for food during treatment except the days when all food tasted really bad. When that happens you can lose the desire to eat anything and that's when mal-nutrition begins. I found I could tolerate Ensure as it didn't make me gag, plus it was pretty nutritious. The RO said I needed 7 bottles per day, most days I was able to get 6 of them down. For me vanilla and strawberry were much better than chocolate. Even on that schedule I still lost 32 pounds during the 7 weeks of treatment.

For me oral lidocaine was the life saver. Last 3 or 4 weeks of treatment I had to use it before (and sometimes during) each meal so I could swallow. My problem wasn't a tender throat, it was a tender mouth brought on by mucositis.

Chewing Trident gum helped a lot with the low saliva/dry mouth problem. There's something about the xylitol sweetener in it that helps. I tried the Biotene (original formula) products, but for me Trident worked better.

Everyone is different, what works for one may not work for the next. Your challenge is to find out what works for you.

Keep fighting, you will get there.
Tony

Hi Paul. I finished 11 weeks ago and can identify with the constipation problems. Sometimes that was the cause of nausea I think. One week the RO told me she'd seen two patients that day who had been hospitalised (I think she meant that) because of bad constipation so I made sure I took the tablets provided:)

I thought the 6 weeks of treatment would never go by but it went by in a flash.

Best wishes
Maureen

Paul, log your poos and your meds. If you go a few days without a poo it can bring a whole world of new problems you don't want. Coloxyl stool softener is good, but it wasn't enough for me on its own. After 7 pooless days I was hospitalised for the worst 5 days of my life. Movicol is vile stuff, but it works and pushes everything through.

Its wise to have a "go bag" with just a few basics in case you get hospitalised for anything.

Keep the calories and hydration going and keep on top of your pain, don't try to "tough it out". Chin up you are doing well.

Paul, my husband has pretty much the same cancer and location as yours. He will be finishing is last 2 rads of 35 on Tues. I just want to wish you well and tell you to just concentrate on each day. Don't look ahead, just stay in the moment. The days do start to pass before you know it. I honestly can't believe we are nearly done with treatment. My husband only got in 2 cisplatins, couldn't complete the third because his labs weren't good enough. He got nasty hiccups with both chemos. His lasted 2 days and then just stopped. He felt crummy pretty much the whole week of chemo but always started to rebound a bit by the weekend. Make sure you stay on schedule with the Zofran or whatever anti-nauseas you may be on. Even if you don't feel nauseous, take them on schedule. They work much better that way. We learned that the hard way.

I'm glad you are underway with your treatment and keep up that sunny disposition. It truly goes a long way.

Carol

I believe you must be close to wrap up your set treatments by this week. I know (definitely) you must have lost your natural spirand mood to interact with sort of bunch of psychological changes and physical alterations due to treatments. BUT, you definitely will be out of it once treatments complete.
It's a cycle. Each ride has a specific begin and a stop. Once treatments stops, normality will start to appear...

Please update, once you complete your treatments.

Completed treatment last week. WHEW!

Feeling pretty beat up but I have the wind at my back now.

Fantastic! Some feel more beat up the coming few weeks then turn up, others are already on the upswing by now. Either way better days ahead. Great news.

Hi Paul, I see you have just finished treatment, that is great. I'm just getting ready to start treatment, and very nervous. Also wondering if you had extra nodal extension on your Lymphnode biopsies. My RO is telling me I only need Radiation not Chemo because I did not have extra nodal extension... but I'm worried because the Chemo Dr says I should have it along with the radiation. the Tumor board was split. I'm not sure what to do, so I'd like to know what you had, since your DRs had you do both. Please let me know.

Thanks,
Angela

Paul congratulations on finishing treatment. Dig deep over the next few weeks while maintaining discipline in nutrition. Try moving around and doing simple exercises to help with recovery. Your body has been through much and in some ways you have a ways to go. Keep this group posted and ask questions. Get your calories and keep the water intake at 80+ ounces per day.