Dear skp- you MUST keep track of what he eats and drinks on a daily basis- otherwise, if he ends up in the ER, you will not be able to answer important questions-also, if he starts losing weight, you need to be able to tell the Docs what is going on at home. Hope the fentanyl patch works[it was not good for us, but alot of people have have success with it] GEt your Nurse hat on. Amy in the Ozarks

I agree with JAM, you must keep track of the daily calorie intake. My nutritionist said I needed 2,700 calories a day minimum. Just as I was finishing up my second round of chemo I couldn't eat by mouth anymore, and so I was pouring 2 cans of Carnation VHC (560 calories per can) down my peg tube 3 times a day. Believe me, the nutrition and calories help in the recovery from radiation and chemo - like a medicine.

You can purchase Carnation VHC 560 calorie drink on Amazon.com. Make sure to go through the link on the main forum page of this site.

Also, along with the Benefiber I was taking daily, I was also taking stool softner, 2 pills twice a day, which was the Walmart brand. After a couple bouts of constipation, I swore I would never go through that again.

Tom

skp, I just read your original post. I remember all too well, and all too recently, being in your shoes. Mid-way through treatment I wondered how we would make it through to the end.

There were days that my husband would go to sleep, hoping he wouldn't wake up...because he just didn't know how much more he could take.

And, now, he's a little over 3 months post treatment. He's working part time, he's eating a lot of food (although the only one gaining weight is me ) And, life is pretty darn good.

You two will get through this. For some, it's a harder journey than for others. I always love reading about how someone sails through treatment. That wasn't our experience. But, we're reaping the rewards of the challenges that we faced. Every day is like a new beginning.

Wishing you and yours the best!

Hi Skp

Like Margaret I have just read your original post and really empathise with your feelings, it seems so bad that you can't imagine it getting any worse. My husband has just finished day 20 and I have just found him in tears. He is not able to swallow even water. I don't know if this is normal. I was trawling through the site trying to find someone else who had lost their swallow and came across your posting so didn't feel quite so alone. Margaret's post gave me a little hope.
Let's hope and pray we all get through it Ok.

take care

Katie

Hi Katie, I also lost the ability to swallow even water about 2-3 weeks into radiotherapy. Luckily I had a peg tube, so I was able to keep my weight up and keep hydrated that way.

Skp07, 2-3 weeks in was the hardest time for me, after that it got easier as I stopped thinking about what was still to come, and just focused on having the best day possible under the circumstances.

Hang in there, it will pass, things will get better.

Best wishes to you all

Thanks John - how are you doing now? My husband also has a peg, thank goodness, so to get things in perspective, he is also able to maintain nutrition and hydration and ensure meds are able to be taken. Just so I know what to expect, how long did it take for you to be able to drink again after the treatment?

Sorry to have hijacked your post slightly skp, hopefully your husband won't get worse but if he does there is much information here.

Katie

To KatieM,[and SKP since this was her thread] It's too soon to be asking "How long until he gets back to -----". You all are at a day to day stage now and you need to stay in the present. If your loved one is on chemo or dealing with radiation then you need to research HERE for all the info you can gather about how to deal with potential problems.[no need to surf the net, that just confounds the situation] Chances are you won't have to deal with all of the problems, but you will learn what to watch out for so you won't be caught unaware. Remember-forewarned is forearmed! Be really, really strong now. This is doable. Amy in the Ozarks

Hi Katie, in my case it was a few weeks after the end of radio/chemo before I could swallow properly again - however, I should point out that I couldn't swallow for over three weeks after the original surgery, so you shouldn't assume it'll be the same for you husband.

Swallowing was something I seemed to have a particular problem with, whereas in other areas I got off lightly. Having said that, I now take all my food orally, and have a pretty good appetite.

I'd echo what Amy said about staying in the present - it's easy to get hung up about the things you can't do, so it's important to try and get whatever little pleasures you can wherever you can get them. One day at a time, just try to have the best day you can. You will get there!

Hi all, just an update....yesterday was day 19 of radiation and Monday we will delve into the second round of chemo. I am happy to say that other than the eating problems things seem to have leveled off. We definitely have our good and bad days and I am learning that just because one day is terrible doesn't mean the next one will be as bad. He took off the pain patch this morning and says he actually feels better without it. He said it made him feel too dizzy. So we may ask to doctor for something else to try. He is not getting all of the calories he needs and it is a point of contention with us. I try to remind him he needs to eat and he gets frustrated because nothing tastes good. He gets hungry and things sound good, but a few bites and he can't eat anymore because of the taste. He did say he may use the tube tonight to get some more calories. He is doing fairly well drinking water!! I can't say enough how glad I am to have found this forum!!! You are wonderful!!

Does anyone know if over the counter meds (throat sprays) can be used? We asked the nurse at radiation and she said as long as there is no alcohol in it. Has anyone tried using them?

I am with Amy on this one, it is way to early to ask how long.... You will drive yourself nuts.
Since you are in the middle of the rad treatment take it as it comes and be prepared to deal with the side effects. Yes it may be miserable and probably will get worse before it gets better...... BUT it will over soon and later it will get better. Tons of people have gone through this.
Re sprays:
I have not used them but people use soda/salt rinses that you can tolerate even when other stuff hurts. You can change the composition (lower or leave out the salt) if that bothers you. Also what helped me at the end of the rad/tx when eating was becoming "unpleaseant" was viscous lodocain. You can dilute this a bit (if necessary) and swish it around your mouth... then you have some time (1/2hr?) to eat and talk.. Watch out for development of thrush which often happens because your immune system is in thr crapper. (It makes things more painful, and needlessly so).

Best!
Markus