New to this, Husband just diagnosed with stage 3 left tonsil cancer

robswife87 said:

We didn't start with PEG

either, He got it about 2 weeks ago. He lost to much weight, mostly because of the dehydraton. 

He has been straight PEG for feeding but tries to continuse to swallow water to keep those muscles working. He is fighting bad thick musous which I know is causing his low grade nausea. Going for L-glutamine today, hoping it helps. Trying to get him to take his compazine has been a huge fight.  

Rob has always been a huge workaholic and this has been very hard for him. Staying home is not his thing but just walking out to the deck is very tiring for him. He has never really been a sick person. The flu about once every tens years and he continued to work. 

Continue the good fight, you both will survive and life will be good once again. At least that is the thought that gets me through this.

Sandy

Just a quick hi! I notoced some time ago that your husband and mine have the exact same pathological staging. same side, same number of nodes. Maybe not so unusual, but I happened to notice. But I really came to say that my husband has has good results with using papya enzymes for breaking up mucous. His rad onc suggested them and he says they work quite well. They come as little chewable tablets. I think if he can't swallow he can chew them and they'll just dissolve in the back of his throat and start chipping away at the mucous.

Hang in there! Finishing this week, right?

Jon just finished Friday and his pain has increased a little. It's harder to eat still and I'm concerned about the continuing weight loss. His radiation burn was at it's worst Friday night and then two days later looks totally fine. It's nice to have something improve.

Take Care,

Helen

janetluvsron said:

gbc52I am also new with my

gbc52

I am also new with my husbands diagnosis, they are very helpful , especially "T" and for the life of me I cant remember her name off the top of my head but I think its phranni

she has posted on this thread and so has he and they have both been wonderful and supportive.

cistplatin is a type of platinum chemo. but my husband takes a big does of it on day 1 of radiation start and days 21 and final  another does , I think its supposed to be every 21 days during radiation and he will get 7 weeks of that.

He had a tonsilectomy and that is how we found the cancer. no other surgery. we are doing all the radiation asap to try to avoid all the neck disections and taking out soft palate and parts of the tongue since they do believe that the tonsil was the primary site but they did not have clear borders.

Out radiologist does not start with feeding tube and neither does the oncologist,they feel since my husband is 40 pounds overwieght he would be fine. I dont know, that tonsilectomy was harsh and could barely get him to drink. I told the oncologist that and he has threatened that if my husband doesnt drink enough he will hopitalize his but in a heartbeat.

I used to work for a family practice dr that also was had holistic training. I dont think the juices can be used very well since they mostly contain natural sugars. but keep researching vegetables and a good juicing machine. I am in the process of that to find extra supplements. Our radiologists does not want any supplements in the form of vitamins or herbs to help due to not sure how they would react or interfere.

and we were told that if the cistplatin does not tolerate well then they would use alternate chemo weekly, I am wondering if that is why some ppl have other chemos?

Please keep me updated on your husbands progress and may god be with you and keep him strong and you too.

janet

Hi Janet,

unfortunately i dont have anything to share about your husbands cancer for i had NPC stage 3 in 2000, i just wanted to let you know that whAt e eryone told you is true and awesome advice and i was treated one year before your AC pamplet was written an on September 28.2013 i will be celebrating 13 yrs NED, so dont focus on that or anything negative go into the whole process thinking What do we to to WIN, then WIN!  You support, he'll fight and together we will all pray, and although its a long and extremeky rough haul before you know it you'll be looking back and be like whew well thats done!  I was out of work for 9 months back then, i developed food aversion and dramiticallh lost weight, not to bad for a girl, but caused me to be very weak for sometime afterwards!

hang in there and if you need us for anything you know where we are!

good luck on your journey and God Bless you both

Rachel

janetluvsron said:

Helen,
would love some

Helen,

would love some smoothie receipes and the name of the acidophplis.my husband isnt a yogurt or kale person but he likes most everything else.

How is your husband doing so far?

god bless

janet

I meant to reply to you earlier. Darn, there sure are a lot of newbies here lately, it makes me sad that so many are going through this but at least you/we are in good company. 

For the peanut butter one 1/4 cup peanut butter, creamy type, one ripe banana, two scoops protein powder, 1 tablespoon flax meal one cup whole milk or more, and a little ice but your husband may prefer room temp later. I usually doubled this, but for this amount it should come to about 750 calories in a pint. You can play with it to amke it sweeter (honey) or thinner, more milk, or more caloric (oil)

The other smoothie I like to make is just a cup or more of apple juice, maybe a splash of prune juice, a ripe banana, 2 tbs flax meal, 2 scoops protein powder, one cup plain yogurt (full fat of course, and greek has even more protein but is thicker), but vanilla would go nicely, a handful of dino kale washed well, and a handful of frozen or fresh blueberries. I know you said your husband doesn't like yogurt but it's so good for you and has a lot of protein. I think masked with apple juice and/or honey he might not object. As time went on, I had to adjust some items due to thickness or temperature issues. 

My husband started each day with one of these smoothies even while he was able to eat. I'd make it in the morning and he'd drink it on his way to rads. I have a travel smoothie cup that is 28 oz. The idea was to get good protein, fiber, and healthy fat into him. He's a vegetarian and getting the amount of protein that they suggested was a real challenge. For many people just blending meat and broth would work. 

The chemo doc said no antioxidant supplements since the whole point of chemo is to oxidize. That made finding protein powder-type meal replacements a challenge. I went with just a grass-fed organic whey protein with no added stuff. I also recommend a product similar to ensure that uses organic whey, called Orgain. From what I understand, whey protein is particularly good for muscle building due to the naturally occuring amount of glutamine. And to top it off, I would add a tsp of glutamine powder, but not always.

My husband really has done well. He has battled lingering nausea and has some mouth pain from mucositis but not too bad. His mucous and saliva issues are not bad. He sleeps weel each night and has some energy. He only started taking pain meds last week (his last week of treatment) which has had the unfortunate effect of constipation. Definitely stay on top of that! Every single med will cause it, especially the chemo and anti-nausea meds. His doctors didn't mention any need for laxatives before chemo but they should have. 

If you are shopping for things like protein powder, orgain, acidopholis, neck cream or aloe, flax meal, papaya enzyme, stool softeners, I would suggest using Vitacost, vitamin shoppe and amazon and do some price comapring. These items can be pricey, but especially so at a pharmacy or natural foods store. The acidophilis we use is called ultimate flora critical colon. You should probably ask your docs first, but all these items were heartily endorsed by the nutritionist at UCSF where we were treated. 

Fancy products or not, it's just important that your husband EAT and DRINK a lot. The infusion center at UCSF was a busy place and we set up regular iv hydration appointments to coincide with his rad appointments to start after the third week. I didn't want to "wait and see" I just knew that he would be better off if that was all arranged ahead of time and that was true, so if your place is busy as well you might want to set that up from the beginning.

Well, I went on a bit more than I planned, I hope it helps and that your husband does well. Don't forget to take care of yourself, go for walks, meet with friends if you can. Vent when you need to. 

Take Care,

Helen