#77534 07-26-2008 05:24 AM | Joined: Jul 2008 Posts: 1 Member | OP Member Joined: Jul 2008 Posts: 1 | My husband is into his second week of radiation for tonsil cancer and a tumor in his neck...he did aggresive chemo before his radiation and will continue with a lighter dose of chemo weekly during the next 7 weeks of radiation daily. PEG tube has been placed for approx. the last 3 weeks but he isn't using it yet. All he has eaten for the last 4+ weeks are Cup of Noodles and juice bars. I'm feeling a little scared and sad for everything he is about to go through. I think this site will help me and maybe I can even get him to use it.
Colleen | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Colleen, He needs to eat/drink at least 2000 cals each and every day and he must also drink at least 48 ozs of water each and every day. No exceptions or his health will definitely pay a toll during and post Tx. You can play a huge role in this by maintaining a daily log and don't let him put off one scheduled feeding or hydration. This is SOOOO important. Probably the most non medically important thing you and he can do. We all know that's it becomes more difficult to keep up in the latter stages of Tx but it will only make matters worse if he doesn't get that daily fuel and water. One thing that I found extremely useful when my throat burned like hell was Carnation Instant Breakfast VHC. Below is something I posted a while back and I keep reposting it for everyone new to the game: Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only pay about $32.00 per 24 can case at Walgreens. That's only $5.00 a day for 2000 calories. Click on this link: http://www.nestle-nutrition.com/family.aspx?objectID=86E49EB3-BE25-4B16-81D7-235E6F6E5183 Under the PURCHASE PRODUCTS tab, select FIND A PHARMACY NEAR YOU. Under the PRODUCT NAME pull down, select Carnation Instant Breakfast Lactose Free VHC and fill in your zip code and they will give you a list of pharmacies that carries it. At the top of that list note the Product Code and NDC Number in case that helps you when you call the store. When I call Walgreens it only takes a day or 2 at the most to get it delivered to the store and they call me when it's in. You can also order it online but it usually costs more and takes much longer to get. No, I do not work for the company nor do I get a commission (I wish) but this product made my feeding life during and post treatment much much easier and I am sure it will do the same for you. This is a very valuable site so use it as often as you want. Don't hesitate to ask ANYTHING.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | Hi Colleen,
Welcome to the OCF boards. Sorry you have to be here. Ask questions, search the boards. There's a lot of good information to be had here and a lot of support for both the patients and caregivers.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Hi Colleen, Is it nausea from the Chemo that is keeping him from eating normally, or did they also do some oral surgery?
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Sep 2007 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2007 Posts: 148 | Hi Colleen I went through radiation and as a result have lost 75 pounds. I am very weak. I tried to do what my nutritionalist said but food was horrible tasting and burned my mouth. I used all the stuff they told me to use. I am 8 months out of treatment and still loosing weight. I am down to 105. I try to keep records of my food intake as well as the WATER I drink. As Davidcpa said it is very important. That Carnation instant drink, boost and insure has kept me alive. I do eat some foods. I can make a meatloaf that is moist enough you really don't have to chew it. I use a ton of un salted not spicy gravy on everything I eat. Yep I can even eat a bisquit. Tell your husban that once he gets used to the flavor of the carnation,boost and ensure he will get to where its just like drinking a coke or what ever he likes to drink. Come back to this forumn often, I come back to search all the time when I get new problems. Dr Mike just helpped me with one and I feel better knowing what to try to do to fix it. There are a lot of very knowledgble people here, and a ton of folks that are or have gone through what you and your husband are going through. Good luck to the both of you. Brenda
49 years young 9/2007 Squamous Cell Carcinoma 33 rad treatments. One year later, 9/17/2008 50 years old through the Grace of God. last check up all clear. Living life as it comes to me.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | You make your hubby eat. I notice you didn't say they removed his teetH. Make him est and he can put up with the side affects. If I could put anyhting solid in my mouth and chew it, I bet I could back some of the 70 lbs I lost. It will also make him very weak. I got to the point where I couldn't navigate in my house from being so weak. After I started eating VHC and whatever I could swallow without chewing, I regained a lot of my strength . I am like the lil energizer bunny, always on the move after being helpless almost. I have heard different amounts of water but for sure he needs the 2000 calories a day. Grab him by the collar and say look here MR, I am the boss and you will eat. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Aug 2008 Posts: 9 Member | Member Joined: Aug 2008 Posts: 9 | Colleen make him us iit a little a day I had my nephew help me at first said I didn't need it then came the time I had to. went down to 183lbs from 260. Now back to 225 feeling good. Good luck Joe | | | | Joined: Aug 2008 Posts: 9 Member | Member Joined: Aug 2008 Posts: 9 | also i cannot say enuff good things about chocolate milk from the calories to the taste and most important the viscosity has really helped me with my swallowing. I added protein to it for awhile. After he gets a little better hash brown with country gravy is easy to get down add some poached eggs to go with it. Lots of butter on everything. I have been eating like this since Jan. had my cholesterol checked 202 bp is like 117 over 78 not bad for a 54 year old cancer survivor. make a chart of what he actually consume and how often. btw chocolate milk from the store is what works best quick and the like added to the milk does not have the required viscosity it was chalky tried it to save money didn't work for me | | | | Joined: Apr 2007 Posts: 93 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2007 Posts: 93 | Colleen,
If eating and drinking gets to be too uncomfortable for your husband, then he will have to use the Peg tube. He needs to be hydrated and have sustenance for energy to fight this battle. So if he's not eating enough use the PEG. If he doesn't want to use it, then he has to eat more. Keep a schedule of the amount and time of the feedings. My sister lost the ability to swallow before TX and she used the PEG during the entire treatment. Actually made it easier to be sure she received enough calories and hydration. She was very cooperative about the feedings, altho she missed food and being able to taste.
My best to you and your husband.
Nancy
Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | It is advisable to keep swallowing every day so those muscles won't atrophy and loose the ability to swallow. It only takes a few days and trouble can set in. I also yawned a lot as a way to force myself to open and stretch my mouth.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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