Hi all, My spouse has severe mucositis. One more rad to go; had carboplatin tx last Thursday. He has been miserable on zofran and compazine round the clock but still sick today. His mucositis gets so bad it chokes him. Been using the soda and water rinse every couple hours. Everything goes through tube as he cannot stand to swallow; finally found Boost Plus that he can tolerate so hopefully he won't lose any more weight.

Questions: What works for mucositis? What helps for throat? Looking for something so he isn't so miserable. I hear he will start recovering in a couple weeks.

Positive

When I found OCF, I was having tremendous mucous problems and asked about mucositis only to find out that it had nothing to do with mucous, and instead meant mouth sores. You can do a search here on OCF for mucositis for the threads, but basically most people used a baking soda rinse. I used seltzer water which while it burned, worked on both the mucous and the mucositis. Here is a link to the OCF main page on mucositis
OCF Mucositis This has detailed information and info on drugs, rinses, etc that I hope will help you.
charm

Hey, My hospital had a solution in a bottle called magic mouth wash which helps coat the sores! The thick mucus I used liquid mucinex and put it in the feeding tube!! Good luck! The end is in site. Then the 3 weeks after will be rough then things will start getting better. I am starting on my 6th week post treatment and can eat but it takes along time; very frustrating coming from a guy who could pound a large sub away in minutes. Not sure if I'm eating enough to gain much weight; but my goal is to have feeding tube out by the end of Sept.

Charles

positive,

You are both close to the end, we call it walking out of the tunnel. Usually the 2 to 3 weeks POST Tx are the worst so just be prepared. If you are talking about the thick mucous he is producing and is choking him, that is also very common and it will last a few weeks and then give rise to total dry mouth. Like everything else we all can have different levels of reactions to the same Tx, some barley anything and some horrible. I use to carry a Styrofoam cup in my pocket and spit in it constantly. At night it was the worst because I would wake up choking and could barely make it to the bathroom and then it would trigger a nausea reaction.

You also should look into Carnation Instant Breakfast VHC which has a whopping 560 calories in the same size can as Boost, etc. You have to either order it online, like Amazon, or through a pharmacy like Walgreens or CVS. You don't need a prescrip and it runs appx $35 a case in yummy vanilla. With that many cals in one can it cuts his swallowing down by a third which with everything he is dealing with, that's a good thing.

Carnation VHC can be very hard to find in the stores. If you order the Carnation VHC from Amazon, please use the Amazon link right here on the forum pages. OCF gets a tiny kickback from every purchase. I buy it every month from Amazon and it gets delivered usually 2-3 days later, it runs $42 total with the shipping costs.

After over 3 years I still have that gunk in my throat. I agree that at times you think you will choke to death before it leaves. But it always does.

thanks for all the advice. we are on uphill swing now even though I know he has to go through this recovery period. He's been hanging in there. just not having to drive 62 miles twice a day is a relief.

Actually it will be a couple of weeks before the "uphill swing" starts unless he is lucky as the 2 to 3 weeks post Tx are usually the worst part of our Tx.

Hey Christine, Can you send me that link/want to use it when I order Carnation VHC again.

13 days of radiation to go/2 more chemo treatments! I'm seeing the end in sight.

[quote=susand]Can you send me that link/want to use it when I order Carnation VHC again.[/quote]
Here is the link. It's also at the top of the home page for the message boards.