Well folks, they got the machines up and running so we were able to complete radiation yesterday, 11-11-11 at around 1. DONE, working on calories and getting the WBC up so we can finish the last does of Chemo. This morning was great, fantastic, wonderful! Pat was eating oatmeal and egg salad and drinking a lot of water, looking like a champ and lifting weights. Towards the late afternoon and evening it kind of fell apart and even with pain meds wasn't able to eat but still drinking some. Got Musinex and that has helped and trying the meat tenderizer tonight. We really appreciate everyones well wishes. Seeing a light at the end of the tunnel!

I have not taken the time to thank you, it is really nice to chat with someone that is basically in the same spot, fast forwarded by two weeks. Please know we are thinking of you too and wishing you a speedy recovery. I think the metal hooray that the zaps are over are helping a lot.

Has anyone had a problem with the ensure? He has not been able to drink that for weeks and I am not sure if it is something in it that makes it burn so much. He has to spit it out and gargle every time he tries. I have tried Carnation with the same results. Was so great to see him eat, if even a bit today.

We are almost 2 1/2 weeks out post tx. Kevin is still dealing with the mucous, but it is getting better. It would probably be a good idea for your hubby to go for fluids 3x week. Hopefully he is doing that. I can't remember reading anything but a recent one time fluids. Even our second week out Kev went for fluids. It just helps give him energy. I have heard the suction machine is a great thing. We didn't do it though, Kevin just didn't like the idea. He did use peroxide rinses often, as well as the magic mouthwash. There are times now that he coughs and pieces of skin come out. We know they are scabs, so some healing is happening for sure. What is the chemo they are waiting to do? Is it Erbitux? If so, keep in mind that that stays in your system for another 2 weeks after the last tx too. Kevin is just getting past te last of the rash. His outside burns are finally beginning to heal also. That has take almost 3 weeks. Hang in there. Like I said before, know what's coming and hunker down and do it. Then you can start living again. We even went to Lowe's yesyerday!! Man Heaven!!! LOL

I know that helps. We went through that high too. Ahhhh, no more zapping. Kevin tends to be a too positive thinker though, if there is such a thing. When he didn't instantly feel better he got down for a few days. Better now though. You're very welcome! I know it is so nice to know we are not alone. All of us, caregivers too. I never would have imagined how hard this would be on us. Their our guys!!! We hate seeing them suffer. It sounds like yours is as tough as mine, so that makes it harder to see them beat down by something. We will conquer and get our guys back though!! Keep in touch. Kevin drank the Ensure the whole time. He would take his Lortab and 20 minutes later drink up. Last night he had spaghetti with Alfredo sauce and spinach on the side. He's really beginning to eat again. Now we are searching for bland enough foods so it doesn't burn. Big progress from 2 weeks ago though. He doesn't like oatmeal!!!

As the OCF resident contrarian, my advice is somewhat different.
I refused a feeding tube the first time I had oral cancer and like your husband found it very tough at the end. I had not found OCF at the time or else I would have panicked since my doctors all agreed that only 2000 calories a day would get me through and I could barely make that. David and Christine are right about another 500 or 1000 calories on top of that is much much better but I thought you would like to know that at 5'11 and a full sized male, I did fine with 2000 calories. I just could not force down another sip of Ensure Plus if I had wanted to and I'm glad I did not know it was technically "not enough" calories.
As far as Ensure Plus, I would take a sip, swallow, then gag and spit out mucous. Take a sip, swallow, gag, spit, It took about a half hour a can but I was bound and determined to avoid dehydration and malnutrition. It worked as I never had to go to the hospital for an IV or treatment, not even once.
Your husband is way ahead of the game if he can actually swallow real food like oatmeal. I lived on Ensure Plus (more calories than Ensure, less than VHC) the month before TX ended and two weeks after that before I could do oatmeal.
Last but not least, I could not have done it without the Patch.
Keep the Faith
Charm

I think for right now we have settled into a semi- early healing pattern. He is on the patch, 50 mg which was upped from 25. They also put in on Fentora ( a dissolve in the cheek pain pill) which he takes before eating. It has to be ordered by most pharmacies and is very expensive, but thank goodness for good insurance! Liquid morphine did not work. Anyway, with that he is able to eat his oatmeal and we have now added egg salad and about 4 glasses of water before things start tightening up and hurting again. When the clock reaches 6 or 7 he is done, in pain and on the recliner for the night. So we are going to hit all the eating we can during the daytime and not try in the evenings. When he did go to the ER to get bloodwork last week his readings were all good other than his blood counts, but no signs of malnutrition and just a minimal sign of dehydration. He was able to drink up through week 6 so I am sure that helped. The chemo he is on is Cisplatin and will be rescheduled within the next week or two. His skin is amazing and almost healed up, just red, no more scaling. We used Aloe Vera throughout and he just has sores on the back of his neck that we had neglected. Also, thank you so much for the meat tenderizer tip!!! With a few gargles and rinses it really does thin the mucous!!!! Now that he is eating more and we know the pattern, I am not holding him to the 2500 calories since his bloodwork has been so good, he is 5'7" so I think requires less, we have a daily goal of at least 1500 but man once he can eat again, ribs it is! Thanks as always for your caring and sharing!

When you get a chance, please add a signature so we are able to help you easier. It doesnt have to be anything fancy, it just lets us know the history so its easier to give assistance.

Click on the "My Stuff" tab, on the drop down menu click on "Profile". Scroll to the bottom and type your info in the white box.

Push the water. Cisplatin is very hard on the kidneys and needs to be flushed out of his system. Watch for any change in his hearing as that is another very common side effect.

Best wishes with one last treatment!

Update, they canceled the last Chemo. Said protocol is to do the 3rd one at the same time as Radiation. Since his blood counts were below 900, I guess they figured that it it moot now by the time his body builds back up for it. Now we are just struggling day to day with recovery. Still on oatmeal and egg salad in the morning with water and doing pretty well, the afternoon one is more painful but he still gets it down. We are still in a pain spiral after 6 even with the pain meds. Tonight is the worst, sore jaw, can barely talk, indigestion and a lot of pain. Is this normal? Mucus is still a huge problem, but still doing the meat tenderizer and it brings a lot of relief. Nights really suck right now.

Debbie, dont worry about skipping the last dose of chemo. I also didnt get the 3rd dose. There are several others here who also bypassed the 3rd round.

With his numbers so low, has the doc suggested a shot to boost it back up? I think one of the meds your husband can get to boost his white count is called neulasta. There are a few different ones that will help your husband get his numbers back to where they should be. Ive had the shots too.

Unfortunately your husband's side effects are normal. Oral cancer treatments can be brutal!!! Only a few more weeks til he will begin to feel better. take it day by day or hour by hour is its a bad day.

Best wishes with Pat's continued recovery.