rons progress

donfoo said:

Keep marching

Hi Janet,

I used two topicals for the oral sores, ulcers, and "patches". The patches are areas that get this sort of whitish/yellow spotted coating and it showed up most on the soft tissue at the back of my mouth but also a lesser coating on the roof which did not generate any pain. Topical Lidocaine is the liquid stuff you put directly upon the hurting area once you have done all your other rinsing and such. I never had any nausea issues so I could just apply and rub on the spots using my finger, even pressing my finger back into the deep corners underneath the base of the tongue. Once in awhile I would gag but minor vs the benefit of really getting the Lidocaine directly onto the sores which made a difference. Only thing about this is it does not last long so it really was most useful when I had a mouthful of sores and wanted to eat.

The other topical is a dental paste containing some medicine. The little tube says Triamcinolone Acetonide Dental Paste, USP 0.1%. You place a dab on your finger then quickly rub right on the sore and spread to cover it. It very quickly sets up and turns kind of waxy hard and once set is really not movable so over time you get the pace and timing to get it on and in place before it sets. It works well enough but none of the topicals have much long time effect.

The last oral treatment was the magic mouthwash and as I type I just swished and swallowed some as even at this 5 week post milestone an ulcer has returned to the back lower mouth under the base of the tongue. I have no idea why it has reappeared since all the mouth sores were banished awhile ago and not rads for even longer to provoke a return. Will ask MO this Friday.

My gums never changed color, so not much to say.

Hydroflossing as in using a waterpik? I forgot to mention this important tool during oral maintenance. My waterpik set came with this curved spoon attachement that sprays a wide arc of pressurized water. It worked WONDEFULLY to remove all the buildup on all surfaces including the ulcers and sore. It was a bit of an ouchie but you can dial it back with the unit. Sal/soda solution was used in the vessel. I'd say 1/2 teaspoon into warm water then stirring until well dissolved before using. This worked really really well and in my opinion beat back all opportunity for thrush to develop according to my understanding that it develops after infection or inflammation, like a second stage. So I worked really hard to keep the ulcers and sores from getting worse. I will say it was certainly painful at times. I would even "scrape" the sores directly to ensure everything was removed in order for the medicines and salt/soda etc to work directly on the affected surfaces. Again, I am no medical doctor so my mind can have run really wild and all this was just a placebo but as I mentioned in another thread, never discount the power of the mind over the body. If you deeply believe you are doing something to reduce the ulcer, I honestly believe you can make your body work subconsciously to apply extra healing there to do as you wish.

I love hearing the extra water fillups during the week. After early on, during induction chemo and chemo/radiation etting hit with dehydration I finally could feel when it was getting close. I asked my MO for a regular Friday infusion of saline to build back some hydration. This was in addition to the weekly chemo I received on Monday during weekly chemo during radiation. I never got dehydrated again!

As to eating, I am full on a PIG. At week 3, I could eat about 90% of days past but I just did not have any appetite and eating was a real chore, slow like a cow chewing cud, chew chew chew, sip, swallow, that sort of dance. During the past week, my appetite seems to have returned. For example, I whipped up some meat tacos last night. The meat I got from the mexican market, not hamburger, but real chopped steak. I pigged out - I think FIVE stuffed with meat and veges. I lost count. I put a lot of the creme (sour creme mix) in there to add moisture and less the need for extra sips. The tortillas were right off the oven and corn not flour but since so fresh very soft. This morning I made a SIX egg omlette with a 1/2 pound of mild sweet sausage fresh from the deli. Added mushrooms and some green onion and ate about half. I wanted my son to eat some but he sort of turned his nose at it. I used the tortillas and made omlette tacos. Yummy! Other half for tomorrow morning. So, clearly my appetite appears at this juncture about 100%. And if not for the current sore back there it would be a fully painfree experience. Having to fallback a bit to the soda/salt and MM swishes is hardly an inconvenience compared to the huge steps forward.

You really are doing great. Stay proactive, keep a positive attitude and keep driving; do not let it start swinging you around. Stay in control. It may seem like you are driving through an ice storm but you are moving and staying on the road so YOU are in control. I firmly believe once you lose or never gain control you are just a passenger going on Mr Toad's Wild Ride and will not get control until it is done with you and moves onto the next victim.

don

hey don, you said you were eating 3 weeks out, what about being able to taste? was that back at any % at that point?

janet

fishmanpa said:

Speaking of paste

Janet,

Glad to hear Ron is doing better. When my mouth and throat looked like ground beef I could no longer use toothpastes that you would normally use. The mint just buned the heck out of me. I've been using Biotene toothpaste for dry mouth. No burn whatsoever. They also make a gel that you can put in your mouth that helps. I use it at bedtime and it helps me get to sleep. Now, if I can stop catching flies when I sleep I might not wake up every couple hours with Lawrence of Arabia crossing the desert in my mouth ~lol~

"T"

T

you are so funny. I love reading your posts. I picture you with a tubin and camel with a guitar.

Had to get the biotene for ron today, hope it helps him. I had the gel, thought it was the toothpaste, I had misread.

had to also get the silvadene since saw the start of red and blackened area. trying to stay on top of things, but

they are moving faster than i can keep up sometimes. I need to multiply myself like an alien, lol.

well, off to mow.

thanks again.

Janet

donfoo said:

fyi

Hi Janet,

I took "T" suggestion and use the Biotene dry mouth toothpaste and all the ouchies went away. As to the Silver Silvandene, when the RO gave me the script he was VERY clear not to use it until the sunburn turned into an open sore. I stayed with Aquaphor and that worked fine. I think I may have used the Silvadene once or twice but have nothing to say about it if it helped. My burns just got nice and pink and irriating but did not go the next step to open wounds. don

thanks don,

I use it with my burn patients at work, it works best if open burns, but it will try with the dry peeling areas sometimes.

I had to use it once on my torn up knee burned thru layers of skin, healed up with in 10 days and no scar. stuff is a miracle worker.

keeping our fingers crossed!

janet