Your posts have all been so helpful and positive. My son just had his last Rad treatment two days ago and it was pretty rough with nausea and soreness in his mouth and throat. He's only been able to take liquids and I don't know from one day to the next what he will be able to tolerate. I went to the health food store and got some Whey protein powder. The food store person said that even the unflavored powder had a vanilla taste which made me wonder about putting it in soup. The sheet we got at the hospital on nutrition said it could be mixed with water/juice/soup, etc but I wonder about that. My son's sense of smell has gotten sharper and he smells everything. He sits cross legged on the bed and leans way over to smell it and sometimes he just sits there with his head hanging over the soup bowl. I gave him some beef broth which he had tolerated yesterday but today, he said it tasted weird and I told him I had not added any protein powder ( I really hadn't - hoping I could get him to take the broth without it first) He said it was just his weird taste buds. Does anyone have a suggestion for the protein powder or a special brand? My son has been in bed since Tuesday and very weak and I worry about trying to get him to eat or drink. I'm thinking now that maybe he should have had one of those PEG tubes. He says his throat hurts but the nausea is not has bad now. I've been pushing him to drink water, grape juice (diluted with water) and he doesn't want anything with milk in it. He gets a little upset with me when I try to push too much. I don't wake him if he's sleeping but if his eyes are open I do try to get him to drink something. I've made copies of several posts on this page so that I can show him your suggestions. Maybe that will relieve some of the "pushyness" coming only from me. I'd appreciate any suggestions re any particular brand of whey protein powder and how it does in soup.

Anne-Marie,

Have you tried Carnation Instant Breakfast VHC. It has 560 nutritional balanced cals and is lactose free. You can drink it room temp if he is sensitive to cold. I still drink it to boost my daily cals.

GNC carries a protein powder called AnyWhey that is flavorless. It can be mixed into soups, but it's best to mix it up with a bit of water first, then mix it into the hot liquid or it will curdle, as will other protein powders. It's best when put into cream type soups, so I don't know if he will tolerate even that. He needs his nutrition, and he may need a PEG tube to get him through this if he loses too much weight.

Remember that it's going to get worse for him before it starts getting better -- Post-rad is kinda like having to let food sit in the microwave oven for a few minutes so it will finish cooking -- It can last weeks.

That said, the more swallowing he can do now, the better off he will likely be in the future.

Same is true for opening his mouth as wide as possible to keep everything in his jaw system flexible (search 'trismus' for more info) -- These first few weeks are apparently the critical stage -- If he can stand it with his mouth sores, brushing his teeth will help with the opening and to keep his teeth clean.

As far as taste goes, in my case I could taste salt early on, but anything sweet had an unpleasant metallic taste to it -- Safeway and WalMart carry house-brand nutritional drinks in three flavors, plus there's ScandiShake that comes in flavors and you mix it with milk.

Pete

Anne Marie, First of all thanks for finding the positive in my post, i dont always feel positive but i try! If he starts loosing to much weight fast ( 5ibs. ) a week, get the tube, plus it helps with getting the nutrition and liquids you need, which makes you heal so much faster. It is not painful at all to get put in nor is it painful to have it taken out. If i had to do this all over again, i would ask for one the first day of Rad. The sleeping is normal, i slept for the first week out, then took 2-3 naps a day for the second week, it kicks your butt worse after the treatment, than during! I also would like something one day and not the next, in fact im still like that and its been almost 3 months out (and i still dont have my taste buds back totally) its just going to take time, you will see the improvement he makes everyday, just be "Mom" that has to be the greatest gift of encouragement there is, to have your mom by your side...good luck and let us know if there is anything we can help you with. Merry Christmas and let your son know we are pulling for him. by the way, what is his name?

I found where the GNC store is at and tomorrow will head over there to look for the Carnation Inst. Breakfast VHC, the ScandiShake and the AnyWHey powder. I'm going to bring my son (Paul) my bathroom scale so i can see how much he's lost since he's seen the doctor. When I try to get him to drink more liquid or soup, he says he has to wait between the waves of nausea and pain to subside inside his mouth. He's not doing any mouth exercises because he says he's waiting for the sores to heal. I think the doctor also talked to him about trismus so I know he's aware of how important it is. I'm going to talk to him again about the PEG tube. Thanks for the really helpful reminders and suggestions. It helps to know from those who've been there, that there are ways to survive all these symptoms and move on to recovery. Just knowing that you all care about my son really helps me to keep going too.

Anne-Marie, It sounds like your son is in the "just hit the bottom" stage of his treatment. Many of us have "been there-done that". AS a caregiver, this may be where you have to put your "Nurse from Hell" hat on and wade in and get reeaalll tough with him, his Docs.etc. You will need to be very vocal about what is happening at home on a daily basis and what issues need to be addressed. His issues with smell, taste, etc. are real ones,. but the biggest issue is getting nutrition in him. Don't give in if you see him going downhill. Keep pushing. Amy

Anne-Marie,

You will not find the Carnation VHC at the GNC store. It' easiest to order it through a pharmacy like Walgreens or CVS. They can get it to you in a day or 2 and cheaper than ordering it online. Make sure you tell them VHC, the one with the 560 cals. There are many Carnation Instant Breakfast products out there.

The first 2 weeks or so AFTER TX is usually the WORSE for everyone. By week 3 he will probably walk out of that dark tunnel he has been in and start to feel like he's alive again but ONLY IF he maintains his fluids and nourishment.

In light of that fact you may want to talk to his docs about the feeding tube they put down his nose into his stomach. It takes a minute or so to "install" and they have to x ray his stomach to make sure it's in place. It's temporary and it doesn't require the surgery that a Peg does. After it's gotten him over the nausea hump and he can start to eat solid foods and his confidence returns, he can, with his doc's permission, pull it out himself.

I also did not have a Peg and I lasted until the end of my first week post Tx but I let them put the Nose tube in because I/they no longer was able to manage the nausea. I had mine in 10 days and I stopped taking all meds, got hydrated, got nourished, got rid of the nausea, got my confidence back and started to eat solid foods again. One day I called my doc and gave him my progress report and ask him if I could pull it out myself and he said "go for it". Took 10 seconds and zero discomfort. The "nose job" showed me the way out of my dark tunnel.

Anne-Marie,

I'm with Amy on the fact that it may be time for the "nurse from hell" to make an appearance. When I got to the point where I said I couldn't eat, and I felt like giving up, my husband would hear none of it. He pushed me to keep my intake up, through mouth sores and hacking and horrific pain, and I'm glad he did, because it kept my weight loss to a fairly controllable level, and I was able to recover with minimal swallowing problems.

Cathy

Your posts have been so helpful! I didn't realize there was a difference between the PEG tube and the nose tube. I didn't get to the GNC store yesterday because of plans changing and caring also for his daughter who is off school for Christmas vacation and going to the drugstore for prescriptions but will get back to Walgreen's and order the Carnation VHC. I've made copies of your recent posts and will bring them to my son later today. It's only been one week post TX and seems like a whole lot longer but my son said he felt like he was getting a little better. I don't have to dilute the gatorade anymore and he did drink a whole can of the 350 cal drink during the night and had some soup. Before I left yesterday, he managed to eat 3/4 of a grilled cheese that I made with lots of butter. He is no where near the 2000 cal per day but doing a little better. Says that he doesn't want to break open his sores and have to throw up blood. It's about 3:45am now and I couldn't sleep and your posts have really encouraged me to keep going and help him keep going, too! Thank you so much for caring.