I'm in my 6th week/ and will be finished Sept 7. So far no major pain or swallowing issues. I did try my peg tube out once, but am finding the Carnation VHC a more effecient way of getting nutrition. I'm down 10 lbs and they want to minimize further weight loss.

My question is--can you tell me about the month post treatment? I have heard that it can be pretty bad, as my mouth will "keep cooking" but want to have some idea what to expect. I know the old taste buds won't be returning right away, but it'd be nice if a month out I had some taste back.

Sounds like you are doing really well, Susan. It's great that the Carnation VHC is working so well for you. Of course everyone is different but you have done so well so far, you will probably have an easier time of it than some others have had. My son lost about 20 lbs and there were times, in the waiting room when I thought his jeans would fall off him as I watched him walk slowly towards the Tx room. It was worse right after Tx ended but it was some relief for him not having to go for treatments any more. His taste buds came back at different times and from different places on his tongue. Sometimes his taste was sharper than before, for example with salt. When he was sipping chicken broth, he insisted it had too much salt in it even though I had bought the low sodium kind! His taste buds came back slowly and for different foods. It was always interesting to me to hear how different some things tasted to him and how it changed from day to day.

Hi Susan

You are doing very well with maintaining yourself without using the feeding tube. Make sure you flush it daily even if you arent using it. The next few weeks will unfortunately get progressively worse. After rad is finished, it takes about 2 - 3 weeks before you start to feel a little better. As far as your sense of taste goes, it can take up to 2 years before it is finished recouperating. I started to regain it after about 3 months post tx. You are doing great, best of luck with your treatments and recovery.

I can only tell you about my experience about your remaining time. I continued to get weaker; nothing really helped my nausea so some days I went without any net influx of water or calories. Net meaning what I swallowed vs what came back up. That led to severe dehydration and the Big C (constipation) which was a painful time to say the least. During my say last week of Tx and the 2 weeks following I got IV's 3 times and even enjoyed a hospital stay of 2 or 3 days. They finally convinced me to have a nasal tube installed and that got me back on the road to calories and hydration. Only had it for a week (?) but it sure made a difference for my sorry stubborn butt. Also I lost my7 voice for about a week; lost the hair on the back of my neck and my whiskers from my chin down ( hair came back but not the whiskers); developed the thick mucous stage which lasted about 2 weeks and then came the dreaded dry mouth stage which lasts until you fully recover and then you'll see what percent of your taste and saliva will return. That recovery for me took all of 2 years and that's the physical recovery. The mental recovery is probably the rest of our life but it's not all bad because it does put some things into a rewarding perspective.

I hope none of these things happen to you but rest assured that if they do you will survive them all. Also don't get frustrated during your slow recovery as it does take a long time for your body to heal.

Good luck!!!

Thanks, David. I appreciate hearing about your experience. Will keep on working on my recovery.

Thanks, Christine. You've given me so much help through my treatment.

I had my last chemo treatment on a Wednesday and my last radiation treatment on the following Monday. By the Friday after radiation finished I was in the oncology infusion center felling the worst I'd ever felt in my life, getting two liters of fluid infused. I was in a drugged-out stupor on fentanyl patches and oxycodone and ativan. I took my cans of nutrition through the PEG (which I had previously named My Sharona, so I didn't have to call it "feeding tube" or "PEG") during the day, and infused water at night while I was sleeping. I was sicker than sick, puking all the time. But, after about two weeks post-treatment I started to feel a millimeter better every day.

I hope this isn't too graphic for you, but I thought I'd tell you my experience. You're already doing better than I was at the same stage, so it might not be as bad for you.

If I only knew how to add my info in my signature line I'd do it! But I'm 49 and had SCC BOT diagnosed by a neck bump and directed biopsy's treated by 35 radiation treatments and three doses of Cisplatin at day 1, 21, and day 43. Finished 3/29/10.

Congratulations! You're almost on the recovery side and this is a far preferable place to be. No matter how rough it is!

Sharon - to put the signature info just click on "My Stuff" at the top of this page, click on "Profile" and then scroll all the way down to the bottom of the page and in the box that says "Signature" just type your name and whatever other info you want to. Then click on "Preview" to make sure it's ok, and then don't forget to click on "Submit" and your done!

Susan,

During the recovery everything is an experiment. I finished rads about 6 weeks prior to Thanksgiving. I enjoyed a big breakfast that day and some turkey but white pepper in the mashed potatoes nearly knocked me over. Sometimes you must force yourself over the "fear factor". I found lots of things on the salad bar were surprisingly tasty and easy to swallow plus the really helped with digestion. Spinach is my favorite vegetable now. many of my first meals were poached eggs, and eggs over easy with grits and lots of butter. I am back in treatment and one of my mainstays is a medley of green and yellow squash with onions sauteed. When my mouth was recovering from surgery this medley run through the blender was my first "food".
Bill
SoMD.