Hi Tina,

Jen said the best experience EVER was getting the Trachy out and that was the real turning point in her recovery.

As with the drooling & dry mouth, get the nurses to get you some cotton swabs (large headed ones) - soak it in water and use it as kind of a toothbrush to clean in and around the inside of the teeth, gums and tongue.

With the eating - it will take a while for you to gain function back but I can assure you that it will come back over time.

Great to hear that the recovery is going well and the positive attitude will indeed go a long way!

p.s. Have they talked to you about further treatment at all?

Hi there eating post op for me wasn't too bad I just chewed and swallowed on the good side and stuck to maneuverable food (not mushy crap as that's a nightmare) - for me soft chewable veggies,vOmelettes , pasta etc... We're more manageable than say - mashed potatoes and pur�ed food. Hugs and hoping for a speedy recovery for you..

Hi guys, thanks Cheryl, they told me to stick with pur�ed food, and it was not working well. I tried pasta today and that was better.

Jay, I am waiting on pathology, but most likely will still need a 6 week course of chemo/radiation to make sure.

I have been trying to research chemo drugs, as some are harder on kidneys than others. I donated a kidney to my dad 10 years ago, so I would like to find the least harmful. Anyone know a good source for this info?

Cisplatin will be offered its hard on the kidneys so much so that they hook patients up to a 24 hr iv on chemo day and keep you overnight here in Toronto. Other hospitals don't do that but this I their poocol, but it's a good drug, so mayb ask to have the IV or enquire if carbo is easier. Cisplatin is the standard. best of luck - glad the pasta worked..

Well Tina, You are getting some very good advice here and I certainly can't add to it. Stay positive through it all. I had arterial chemo for BOT. I had to be hospitalized every week (4 weeks) for 3 days to get the chemo. First day to start the IV's, second day the treatment, third day continue the IV's flushing my system. This was along with 30 radiation treatments. Before every treatment I spoke these words "Thank you Lord for the healing I'm about to receive".

I also had a PEG tube. Funny story, I was sitting there one evening feeling about as bad as one can get. I thought, wait a minute, if I can pour Ensure down that tube, why can't I have me a little mixed drink and try to feel better. so I mixed one and poured it down. Pretty good, so why not another, hey this was pretty good. About that time the alcohol gave me indegestion and that acid started coming back up on that raw throat!! I was looking for a fire extinguisher fast. I poured everything I could down that tube to get it stopped!! Don't try that, please.

Anyway,if I can ever help, advise, etc. don't hesitate. You're going to be fine, just get in touch.

Thank you and best of luck.
Mac C.
Tennessee

I'll keep vodka off the list of approved nutrients!

I'm hoping to avoid the Peg, as is my doc, but we'll see how it goes.

It seems everyone gets cisplatin and that one seems to be the worst for the kidneys. Has anyone had other chemo drugs? I'm not sure how to research this without other names. Being a control freak I'd like to go in with some other options I'm at least aware of in advance.

Tina

Ask about carboplatin. It is every bit as effective as cisplatin since it's platinum based with far fewer side effects. DavidCPA here has often posted that every MO he has ever asked always says, oh yeah, carboplatin would work as well.
That has been my experience also, they just go with cisplatin as a matter of habit.

If you do get the peg, hard liquor and beer are out, but wine is fine.
Charm

Carboplatin is commonly substituted for Cisplatin. Its very similar and doesnt affect hearing like Cisplatin can.

Dont forget to get a hearing test and a full blood count including thyroid.

I was scheduled for Cisplatin until I told my doctor that I had some hearing loss from an old ear infection. He imediatly changed my chemo to Corboplatin. He saw very little difference.

Thanks. I'll look into that and discuss with doc.