I'm only beginning the second week of treatment and I'm showing signs of the dreaded symptoms already...bummer. Oh, well. After all, they did say that they are treating me aggressively and throwing the kitchen sick at me; also doing both sides of my neck, so that makes me happy (in only a way only we folks could understand)!

I saw my MO today for my weekly checkup and she could see some mucositis starting on the surgical side of my tongue already. I asked her if there was anything else that I could so to slow it down and she said no. I'm already doing the salt/baking soda rinses, oral care, water, hard candy, etc. My mouth is pretty dry already, but I'm missing my left submandibular gland from my first surgery. She gave me to okay to use the manuka honey, but I'm not sure if I should use it now or later...Cheryl, I know in a previous post your told the me strength. Was it 16 or something. Please forgive me that I could not find your instructions. Oh, I also have to start using the cool mist humidifier.

Well, gotta get to bed. Another rad treatment in the a.m. I have to say that I am making friends with the mask and the machine. I even gave the linac (linear accelerator, I've just learned) a wink today, and said (in my head) "How you doin'?". Er, um that could have been partly due to the ativan, but not totally. I've gotta come up with a name for the mask and the machine before this is all over. It should give me some thing to focus on during the treatment! Gotta giggle when you can.

Kerri, focus on your nutrition and hydration. It is going to make a big difference in how you feel. Every single day take in a minimum of 2500 calories and 48 oz of water. Rinse with the warm water/baking soda/salt at least 5 times per day. Ask your doc for a magic mouthwash prescription (with refills) to numb your mouth so you can do your dental care and eat easier.

i believe the manuka honey Cheryl used was 16 and found in health food stores.

You know it will get harder before it gets better but thats what it takes to kill the beast. Every day you are one step closer to being well again. Hang in there!!!

Yay for Ativan!!!
I had some not so nice names for Kevin's mask. I just saw it yesterday on a top shelf and it made me jump and creeped me out. I don't know if we should throw it out. God forbid, but if there is recurrence, do they make a new mask?
Hang in there Kerri. So sorry you have to do this. So glad you are sharing with us.
Kathy

Kathy

Yes, they make a new mask each time. I have two at home and they have made a third one already , as that is part of the planning the radiation field process. I'm actually excited about using this third one, because that would mean they have figured out a safe radiation plan for my third time around.
charm

Ask your nurses if they can spray your mouth. This really helped initially - and then became a little less helpful- but still not bad.
I found the VHC shakes great- I liked them at room temp by the third week when I really needed them.
Aquaphor!! Slather it on!'. I looked SO shiny & gloppy- and am so happy I did!! I bought a bunch of cheap tees & put them under my clothes & then tossed them at the end of treatment as they had bad stains. Well worth it though as my skin came through really well!!
I carried around a cup to spit in... Gross, but made for less chasing of lips when spitting into a towel or tissue when in public.

I didn't have chemo, so not sure whether or not these tips will be as helpful- but we are all pulling for you.
You are a tough cookie- this disease has nothing on you!!

Love the machine nicknames!

I have had three masks. First one I stuffed with cloth and used for target practice with my son using my Colt 45. Blew that thing to hell and back.

Second one was partial body head and neck. Stuffed that with hey and use it for bow practice. Not much left of that one. My son has gotten very good at hitting me in the head.

Third one I just told them to trash it. All I have left is the shotgun and that would be a one shot deal.

That's kind of a cool idea Kelly. I could stuff the first one and let Kenneth, our oldest son, shoot arrows at it.
Charm...what do you mean about what you said about the third one? What's different this time?
Kathy

Thanks for all of your replies. Kelly, I love the idea of shooting up your masks! That must have felt great! I told my husband about that and he got a good laugh. He has a sword collection...that might be one way to make it more personal .

Christine,
I know that you are a fan of Carnation VHC and I think you once told me that you got yours on Amazon. I don't need it YET, but I imagine I will very soon. I did an Amazon search and it seems that it's not made by Carnation anymore, but by Boost? Is this the same stuff, just bought out be another company? Has anyone ever had any luck with insurance paying for it? Also, I have to idea how much to buy at at time. Any input would be appreciated.

Thanks,
Kerri

HI kerri... 16 + umf! use it from the get go if you can... it will help stave off some of the symptoms for a bit. good luck and mucho hugs!

It's listed as Nestle now- that's the one I used at least. I also thought the Boost juices were good... They are 250 cals and I could handle them pretty well...

I don't know about insurance paying for them. Worth looking into though.

Good luck.

Kerri, you are correct. Boost has taken over the Carnation VHC. It used to run me about $48 a case which included s&h. If you use Amazon, please use the Amazon link which is the box on the right on the main forum pages. I would add water when putting that in my tube.

Didnt your doc give you prescription formula? I was given two-cal which had 540 calories per can so it was very close to the Carnation VHC. I still would order the VHC as it was alot cheaper than the prescription formula.

Insurance will never pay for over the counter formulas. Many times they will pay for the prescription stuff but not always. Sometimes you have to fight them with a couple appeals. Ridiculous when you are sick!

Kerri! Oh wow-- you are in the trenches. Well, just put one foot in front of the other and before you know it you will be on the up and up every day instead of the slow decline with the side effects. Its hard - just stay distracted with good books movies and good company when you are up to it and be sure to stay hyrdrated and keep your nutrition on target so you give this all the ammo you can.

Thinking of you and hoping this takes care of bizness!!!!!

xoxoox KATE

Thank you, dear friends! I am still able to eat and drink well enough. I am supposed to meet with nutrition next week. I've only dropped about 4 pounds thus far and I'm very overweight, sit that's to be expected. They are monitoring me closely.

Kevin was over weight too. He lost 56 pounds and looks great now. Not a diet plan he would recommend is what he tells everyone. Definetly look into the prescription formulas with the nutritionist next week. Save money where you can!
Thinking of you and knowing you will rock this!! You are an amzingly strong woman with a great attitude. Keep up the good work!

Boost VHC is now the old Carnation IB VHC. Same company and looks similar if not identical to CIB.

I heard you have to take the prescription for protein drinks to a medical supplier, so you can get it as durable medical goods, otherwise it will be denied if purchased at a regular pharmacy.

We were told we could not get the food for the PEG until my husband was not eating orally at all!! Then the insurance would kick in. When the RO saw he lost 10 pounds in less than a week she wrote out the prescription anyway. His last delivery was for a drink that could be taken orally as well and tasted good. We do have a lot left over that I need to pass on to someone else. We thought we would take them to the Hope Lodge but they were not needing them and worried about them expiring. If anyone needs anything, let me know. We have 3-4 types.

The hospital should have set you up with a medical supply company. they will bring everything you need to the house. Ask for a pump too so you can run the formula while you are sleeping. It helps to ensure you are getting enough in.


The Oley Foundation runs a website to help patients who need not just formulas but also the supplies that go along with it. here is a link to their website.

Oley Foundation Exchange Program

I wish I had known about the Oley Foundation. Ken had just received a full shipment when he passed away. They would not take it back for fear of tampering. The VNA gave my mother the name of someone who came and picked it up to send to the Ukraine or someplace like that. I would have much preferred to keep it local.

Kerri - the nutritionist should be very helpful and take care of it all for you. Setting you up with a company who will deliver it to you and make sure you are stocked up.