You need to get a script for both Diflucan (drug for thrush) and a portable suction machine from your dr. A medical supply house delivers it. Doctor can probably order it for you. Insurance should cover it or most of it. Mine is $41.xx a month.

Take care,
Eileen

Paul-Sting rocks and so does your wife ; )

What I meant to say in all seriousness is that yes-you need an MD order for insurance to cover. My dads suction machine is covered 100% by insurance. Med supply companies will rent to you if insurance isn't ivolved. Basically, exactly what Eileen said.

First problem is getting the medical staff to agree that it is necessary. The nurse said it was only used by patients with a trach. No thrush apparently in my mouth at this time, actually they are very pleased how well the mouth looks and little or low pain issues right now still swallowing pretty good.

Hi --

Are you trying guaifusein syrup? (sorry, I can never recall how to spell this stuff!) Barry uses it at night and also sleeps with a humidifier and so far the mucous problem hasn't really surfaced -- although the nurses say they are seeing much less of the ropy mucous with the tomo machine as more of the salivary glands are spared high dose of rad. Hopkins will prescribe a suction machine if needed and have a couple of HNC patients using one. No arguments, if you need something you will get it -- per our RO.

Barry had an "off " day yesterday -- first day he has been actually sick to his stomach in afternoon -- he ate at the hospital after treatment and the soup didn't agree with him and he had failed to take his Reglan. In any case, the end of the week is always the hardest for him as it is post-chemo and also after 4 days of amiphostine. And of course he is tired. Thank God for a long weekend, he ate well this am and hopes to get back to snuff by Tuesday.

We meet with dental oncologist then to review salivary and dental status and whether he needs to start taking anything now for xerostomia or whether it can wait. He doesn't have much dry mouth but he is just at the 35 Gy point where RO says salivary function starts to fail. Luckily most of his left and somewhat over half his right parotid are getting under that (in fact most of left is getting under 15 Gy total) but expect the right one will start to act up. It is already somewhat tender and inflamed which RO says is expected.

Well, hope everyone enjoys the three days off treatment --!!

Gail

Hi all --

Saw dental oncologist today -- he was very happy with Barry's progress -- lots of saliva still and no "ropy" stuff -- some mucositis at back of throat (as well as some thrush though that's on the wane for now) but not really nasty. Barry still eats 100% by mouth and has no swallowing or trismus issues yet -- Dr. said he felt that having gotten so far along (almost into 5th week) swallowing he should be able to do it all the way through. We shall see -- it IS sore when he eats (not when just sitting around) and he takes pain-killers before eating -- if it gets too bad we will at least supplement with the tube -- this is not a "iron man" contest, after all!

Still taking amiphostine, which dental Dr. says he thinks also helps with mucositis. He also thinks the tomo is a big breakthrough in avoiding oral cavity and jaw problems -- much more precise focus of radiation.

Chemo tomorrow -- #5 of 7. Then week 5 starts.

I'm getting to be an expert soup-maker ....Maryland cream of crab still the favorite.

Cheers, Gail

Gail, I know you've said that Barry is not taking Cisplatin and the chemo he is taking is not causing him many problems. Jerry was able to eat soft foods up until the beginning of Week 6 and then he switched to shakes with Boost. He was also able to eat Dole Diced Peaches which he said were almost somewhat soothing in his mouth. He had to take pain medicine about 20 to 30 minutes before eating. The peg actually came in handy for him to take in extra water because he ended up having a worse time swallowing water than the food-based liquids.

Connie

Hoi Connie --

Barry now is pretty confident he will be able to eat *something* by mouth all the way through BUT also thinks that last couple of weeks he probably will have to use the PEG to keep calorie intake up (or hydration). He is not resisting using it, just doesn't feel he needs it quite yet. He is eating soft stuff, soups, mashed potatoes, noodles, shakes made with Nutren and flavoring, yogurt, etc. -- as well as some canned fruits.

He has grade (2) mucositis on soft palate but not rest of oral cavity, but is being bothered by thrush which makes swallowing painful. He's trying a nystatin rinse to kick it back as it is not being completly knocked out by Difucane (waxes and wanes). Some yeasts are resistant, as we women know! Like your Jerry, he's found the pain meds help if taken before eating. Also using GelClair helps with soreness.

However they are all happy with how well he's doing -- as am I. We even went out birdwatching a few hours Sunday and Monday though his energy level is not up to a lot now.

Week 5 starts tomorrow -- 13 more treatments (out of 33) -- our check-off sheet now has more boxes "x'ed" than not! YAY!!

Gail

Gail,
That's really great! Hope the next 13 go as well as the last 20. I'm curious about the difference amiphistone makes. We asked for Jerry to get that as well, but his R.O. told us that there was no proven statistical advantage regarding dry mouth (and also mumbled something about it costing as much as the radiation). He said that because IMRT physically spares the parotid glands (or in Jerry's case, all of one and much of the other) that the amiphistone wouldn't add any benefit. Of course, this CCC still does conventional radiation for post-operative H&N patients. He said if Jerry had been given the standard radiation, he may have given him amiphistone. I found the whole experience confusing because we spent a lot of energy early on trying to get both IMRT and then amiphistone for him since neither were initially offered up by the R.O.

Are there any studies showing the statistical advantage of IMRT + amiphistone over just IMRT?

At any rate, it certainly sounds like its working well for Barry. Jerry definitely ended up with some dry mouth, but maybe it will be resolved between the hyperbaric oxygen therapy and the acupuncture treatments.

By the way, if you like bird watching, you ought to do it in Florida sometime. Every day, I pass Sandhill Cranes, Wood Storks, ibis, Great Blue and White herons, an occasional roseate spoonbill, and a host of other beautiful birds. The 'big birds' are really magnificent, some with a wing span of six feet.

Connie

"mumbled something about it costing as much as the radiation". It's true the cost is really high. Its interesting that your RO thought that with IMRT it wasn't needed though. Maybe it depends on where the cancer is and so where they are focusing the most beams of IMRT, but my RO told me that even with IMRT, my left parotid and a piece of my right would still be damaged so that the amifostine still can help save salivary function there.