For what it is worth my Stanford doc had me doing baking soda/salt rinsed 6x/day from the start. Also before and after every meal.

I am on a pretty high dose of Gabapentin and it seems to help.

The saline solution will definitely help with healing. I used to do saline soaks for my husband when the skin on his neck started to break down. The more diligent one kept at it, the more quickly the skin healed.

Gabapentin will help but do remember you will have to step down when you decide that you don't need it anymore. Don't just go cold turkey.

Great point on the gabapentin,Gmcraft. The doctors have mentioned they will need to step me down.

Great point everyone. Im doing my best. Overnight I lost my sense of taste. It had been touchy for a few days, but i still tasted some things. So eating this morning was unusual and unpleasant. It was both a wonder and disappointment trying different things to see if it tasted any different. I went through a whole refrigerator full of condiments and foods, to no avail. Everything is now texture, but no flavor. I dont know why, but this actually made me cry. My brain knows its temporary, but for some weird reason this is what broke the camel's back, so to speak. I just couldnt bring myself to eat, what essentially tastes like cardboard...so I drank my protein drink instead.

At my treatment this morning, talking with a group of fellow cancer patients...we all shared similar trials and tribulations. At least, i know im not the only one experiencing early problems. We all kind of laughed (perhaps a bit sarcastically) at the ...you dont feel the effects til about the third week,so you shouldnt be feeling this way...statement we had heard from the nurses and doctors. The dry mouth, thick saliva, and gum pain from the flouride treatments have also begun, with ongoing fatigue and nausea, and did I mention skin problems? But! Hey! Its manageable. I can still function and move about, so all is still good in the world.

Anyway....just giving a checkin. Im doing fine.

Im so very sorry to read your sense of taste has disappeared already. Keep trying different things at different times over the next few days. You never know, something may still have a slight flavor. Most of us had our taste gradually change and it didnt happen so soon into our treatments. The old "everybodys different" really rings true with what you are going thru. Just remember, the better you do with your intake and hitting those numbers of at least 2500 calories and 48-64 oz of water every day, the easier all this will be. And yes I do know its easier said than done. I have faith in you and will be with you every step of the way. you can lean on me when you need to.

Wendy, I have lost my sense of taste too. It happened around day 12/13 for me. Just texture as you said. Still have some appetite but eating is weird.

The worst for me is that water tastes salty. I have a sodastream at home and can still drink unflavored carbonated water - it doesn't taste salty for some reason. At some point may not be able to drink carbonated water but hoping that is not soon.

I have started trying different things as Christine said - potatoes are great (as they are mostly texture) as well as avocado. Easy to swallow!

So sorry you are experiencing this early.
Stef

At least I still have my sense if humor!

Update: July 3rd. 11th treatment completed. I was feeling good for the better part of that day. I didnt eat much, but i did eat normal. Certainly didnt make it to the 2500 calorie mark. I was looking forward to the 4th, eating barbeque and sitting in the pool "under the shade of course" . However, that night..all went downhill. I developed some pretty severe welts on the inside of my mouth, as well as the "microwaved chicken tongue". I felt firmness earlier, but i didnt look to see what was causing it, but as the night progressed, my mouth went into defense. I couldnt complete my flouride treatment, I couldnt sleep or eat without pain, and since the good ole doc didnt prescribe anthing but oral lidocaine, i was suffering. So the 4th of July this year was miserable. Eating apple sauce and boost shakes , and ice cream when it doesn't burn my mouth for being too cold.

Today , July 5th. 12 th treatment. I told the nurse and doc about my crazy train. They did not look too surprised nor worried, as this will be the new norm for me during the rest of the treatment. I was prescribed Norco 10mg Hydrocodone -325mg tylenol. A fruity flavored flouride (that i can now tell you taste and smells like a child's vomit after too much sugar candy.) ,Its brutal, but honest! Avoid at all costs! My lips may just have to burn. Oh and a new and wonderful , yet not wonderful addition to my list of ailments. Bleeding gums! What fun am I having! Im trying to hold on people...but the trying to eat, drink, be careful of the sun, excerise your mouth or you will get locked up, normal daily life has been taking its toll. Im doing what i can to eat and drink. And im down 2.4 pounds in 2 days. And im pretty sure tomorrow will be a little more lost. Im having more trouble keeping what i have now, than i ever thought possible. Im going to sleep now, and i pray good things happen in the night.

We eventually got liquid forms of every med and put them in the PEG tube. He finally got to where he could not swallow his pain or any other meds.

Wendy,
Can you take gabapentin? I take 900mg 3x a day and rarely need to take hydrocodone (maybe once or twice a week.) You may want to ask about it.

Are you rinsing with salt/baking soda solution? That is supposed to help reduce the incidence of mouth sores.

I just finished treatment 16 today and have 17 & 18 tomorrow (to catch up for the day lost on 7/4.)

The doctor told me to switch to soft foods today and that it will be 6 months to a year before I can have spicy foods. A little sad about that as I wanted to have Indian food for my soft food - despite not being able to taste anything!

I am so sorry you have all these side effects. Hang in there! Vent here anytime. I occasionally have a cry as well; I think it's good to let the stress out.

Stef

There is no Gold Star for not taking painkillers. Take all you can whenever you can. End of that story!