i will be getting cisplatin everyday weeks 1,4 and 7
i will get radiation everyday mon thru friday and twice on friday

Ive got glutamine powder
i got super acidophilus
i got aquafor
i got a baby soft toothbrush( do you know they invented the toothbrush up in maine where i used to live if was invented anywhere else it would have been called a teethbrush)

things ive read and written in my notes that i think i need
biotene products
carphosol?
suction machine
therabite thingy

anything i can do to prepare or stay ahead of mouth sores and throat and neck problems?

Ive got peg tube in and plan to keep up my water and swollowing
and 2000 cal a day.
Thank you all

Victor:

It looks like you have done a great job at preparing for treatment. For chemo days maybe take a book if they dont have tv's at your treatment center.

Did you arrange for a driver? If not the American Cancer Society can help you with that. They can also help with the cost of prescription meds. Ask for magic mouthwash for when your mouth gets sore. Have you gotten the anti-nasuea meds? Thats important to take them before you get sick and cant keep things down. But everyone goes thru this a little differently.

As far as calories go, might want to change your plan and go for 3000 per day. Your body needs that much to heal and maintain weight thru treatment. Keep up with the fluids too, I was told minimum 48 oz. water per day, preferrably more. Ask your doctor or nutritionist.

If friends and family have asked you what they can do, make sure you take them up on their offers. Its a rough road but you can do it. Keep posting and asking questions, lots of people will help you thru this. Best of luck tomorrow.

Victor,

There are a lot of items on you list that I didn't even know about. So I have been "googling" them.

Today is my 10th rad and my mouth is still OK, but scummy feeling and starting to get a few patches of little bumps along the bottom inter gums.

I am eating and drinking just fine. Water has a bit of a metallic taste.

At night I am waking up about every hour due to my mouth being so dry and sipping ice water, but during the day saliva seem OK, perhaps a little thicker.

I have become a gum chewer and that really helps and it also keeps down the scummy feeling. I image it is also good jaw exercise.

I have been following Margret since she is a couple weeks ahead of me and I see she is now having to rely on her PEG. If I can do as well I have a couple more weeks until then.

I am also hoping to hear what to expect and do once the mouth sores, mucous and pain starts. Just this week the cancer center did have me switch to a soft toothbrush, but they seem to keep just one step a head of things, sparing the details. Probably not wanting to scare me to death.

Good luck with your first Rad

Victor,
are you getting cisplatin daily? If so they are keeping you very busy; would you mind confirming this?
Do you have a PEG? Nutrition is going to be an issue especially later on. I did not have a therabite device. It would however be a good idea to start doing Jaw exercises. This is one of the things nobody on my team ever mentioned.

Don,
you should have a bit more time before it gets worse. Mouth sores will GENERALLY get worse and eating then drinking and finally even speaking will be "uncomfortable".

One thing I was using in my last weeks of rads was viscous lidocaine. you can eved dilute it a little if needed. This gives you short term relief for speaking/drinking etc. Even if you use the PEG you should continue to drink normally told otherwise. Lidocaine allowed me to cut down on the oxycodone/morphine which was good thing because they also cause problems (constipation etc). In the end I used about 1/3 of the oxycodone/morphine. The point is to use as much as you really need. You also might want to use a stool softener.

M

I have to agree on the stool softener. LOL The constipation is worse than

Man I always hit the wrong keys. LOL . The constipation is the one of the worst things I experienced. It will probably be a few days before you experience any after affects, but they will come. It's nothing you can't handle and live with. JUst do what you have to and you will be fine. Don't forget to take a book or crossord puzzles to Chemo. Good Luck.

Markus,
Not wanting to hijack Victor's thread, but do you happen to recall at about what rad you started needing the viscous lidocaine and then again for the oxycodone/morphine?

Last, but not least, does the constipation start once we are predominately relying on the PEG and feeding formula (since I haven't had this problem yet). I was actually wondering if I would poop at all once I was relying on the liquid diet!

thanks

Victor:

Hope today went ok for you.



Don:

Constipation is not caused just by the liquid diet. There are alot of different formulas out there. Its the pain meds that cause it. The liquid diet can cause diarhea. Its a good idea to get some fiber like benefiber to mix in water to flush the tube.

Remember everyone gets thru this differently. I was on strictly tube feedings at 2 weeks into treatment, on the pain patches about the same time and using the magic mouthwash too. But, I had mouth sores before I ever started chemo/radiation.

Don,

Week four seems to be the time the walls start caving in. And it happens pretty quickly. Bill was seemingly doing OK on the Friday of Week 3, eating and not having a lot of pain but by Monday or Tuesday of Week four he could not eat by mouth any more and needed pain meds. He remained solely on the PEG feedings, water supplements and meds until one week post treatment. I did put a small bottle of Gatorade Rain in front of him each day and asked that he sip that by mouth to keep him swallowing...I could monitor how much he got down just by looking at the bottle. The rest...supplement and water, I charted to make sure he got the required calories each day and I attribute that to his quick recovery post treatment.

The pain meds are the major culprit regarding being constipated. Even with a liguid diet of mainly supplements...it is still a problem. Bill's MO suggested good ole Milk of Magnesia to clear the constipation and then stool softeners to maintain and that worked very well.

Hope this helps, Deb

Don, Victor
this may apply for you both. The lidocaine: mainly the last two weeks of radiation. I used it when I wanted to eat/drink or speak, unfortunately the effect does not last long.
I am a bit hazy on the details with the morphine But this was the last 2 (3) weeks of the rads .... and then for 10 days afterwards. However, I did start with it gradually and also tapered it off. I never got up to the prescribed dose. As Deb says the pain meds cause constipation. That said, take as much drugs as needed, there is no point suffering needlessly.
I had problems first after about 3.5 weeks. Counting from my second IMRT start. (see signature). However, I had a yeast infection, once this was treated things were ok again for one more week. That is something to watch for as well.

The liquid diet compacts into "bricks" amazingly well I did not think this possible either. This is something easy to avoid once you know that it may happen.

M