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stage IV post surgery/chemo mouth sores/sore throat help

midwest23
Posts: 2
Joined: Jul 2011

Hello everyone. First, I have looked on this site off and on for a while. There are so many brave and inspirational people on here and I truly appreciate you all sharing your good and bad news in a public forum that helps so many people better understand this terrible disease.

Background:
My Dad was diagnosed in January 2011 at the age of 66 with adenocarcinoma and was staged T3N1 and was deemed a candidate for surgery. He went through a cycle of chemo and radiation prior to his esophagectomy in late April 2011 at the Mayo Clinic in Rochester, MN. After recovering from the surgery he had a great 8 months. Then in April 2012 he started feeling fatigued again and numerous rounds of blood tests were conducted. By late June they finally did a CAT scan and bad news...the cancer was back in numerous spots in both lobes of his liver. He really didn't have any pain or issues up to this point other than fatigue.

Post Stage IV diagnosis
His oncologist in central Illinois determined a three drug combo would be best to try and beat the cancer back. He is taking F-5 infusion, taxatore and platinol. The first few days were not bad but by day 5 or 6 a sore throat was starting and bad mouth sores had arrived. He is on special mouth washes, pain meds and it is still impossible to eat because it hurts so bad to swallow. His White blood cell counts are also extremely low so they have just decided to admit to the hospital for a 23 hour check today with preventative antibiotics, fluids and additional tests.

I am wondering if anyone has had similar issues with these specific drugs or the mouth sores, sore throat etc. and have any ideas that might help. Also, does anyone know how long these sores and or rawness can last?

Thanks you for reading. Good luck to everyone fighting this disease!

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Not a medical person but what helped me when I had mouth sores from chemo and it was from a platin, Cisplatin and 5 FU was liquid Acyclovir. After they put me on it, my sores went away and I took it every time I had a chemo regimen and did not get any sores that would have hampered swallowing. That said sometimes swallowing is hard for various reasons. Is your Dad on a feeding tube? I had a j tube after surgery but when my nutrition was bad, I was put on a nasogastric tube which helped with nutrition. Good luck and hope this problem gets solved for your Dad.
Donna70

midwest23
Posts: 2
Joined: Jul 2011

He is not on a feeding tube yet but they are discussing it as a possibility if he still can't eat in the next day or two. I will pass on the idea of liquid Acyclovir and hope they try it.
Ryan

beowulf88
Posts: 23
Joined: Jul 2012

I'm 48 and also have Stage IV EC, surgery wasn't an option for me and even with the chemo the prognosis is not good. I was diagnosed in January of this year am hoping to be in the 2.7% survival rate. I too have those side effects from the Chemo. I'm currently getting the same 3 meds every other week. I used the magic mouth wash and found it made things taste even worse so I only use it once in the morning and again at night. It has a healing proerty that works on the sores. I gargle with salt water and baking soda 6 times a day. On the days I cant eat I drink scandishake. I order them at CVS. He has to force himself to get some calories. The stronger he is the better he can fight. These shakes use 8 oz of milk and provide 600 calories per. The problem is no protein. For protein i drink whey protein shakes. I use chocolate and peanut butter. I eat a lot of soups, mostly the broth part but it gives me some vitamins. I also eat a lot of soft boiled eggs. I've been getting this regimen of drugs since February and so far my blood work is excellent.
I have the hardest time the week between treatments. I get treatment Tues to Thurs. The soires usually start with me on saturday and last til the following Thursday. I then get 4 good days until treatment starts again. The treatment weeks are actually my good days as I'm pumped up with fluids and steroids. I take all the emend and zofran for nausea but they don't seem to help much. Just remember even though everything tastes like battery acid it is very important to eat as mich as you can. When I was first diagnosed I had already lost 30lbs, but I have kept my weight up since then. Good luck to your father and the fight takes enrgy and energy takes calories to burn. They inserted 1 of them feeding tubes in me but it didn't suit me so I had them taken out. Might be a good idea for your dad. He can take all his calories without having to eat which causes him pain. I hope some of this helps your dad.

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