One week post treatment update

Sounds very much like me at one week post.  In my experience it does get better from here on out.  My wife fed me lots of home made chicken soup with an egg mixed in. We also added in benecals so a cup of soup broth was 400 calories.  Don't strain off the fat from the chicken.  Much, much better than store bought.  I also resisted milk because I thought it would coat.  I eventually learned it wasn't the milk but the corn syrup in the ensure that was coating.  Now milk is my main beverage.

christine2080 said:

Thank you

AnotherSurvivor, Thanks so much! I needed to hear that! Do you recall how soon you felt like having chicken broth? My husband has had so much nausea that he is not remotely interested in food. I'm hopeful that once we get through the 3 weeks post treatment we will begin to see improvements. 

Oh no!  Sorry to hear about your husband's pain, etc.  This has got to be the world' most brutal treatment! On the upside, at least he is finished with the treatment portion.  His body will start to heal soon!  Does he have Zofran for the nausea? If not, I highly highly recommend him getting some. It is a prescription.  Instant relief for Brad (and myself when I was pregnant years ago).  Brad felt the worst on the days where he ate the least.  Calories are so important.  Any chance you could (sneakily...maybe?) mix a benecalorie into the Ensure drink?  That would add another 330 calories?  I swear that stuff and the added calories from it (I added at least 2..sometimes 3 of those a day) got Brad through this. 

Hang in there!

The benecalorie seems to add a tiny bit of a sweet taste?  It isn't chalky.  I think it could mix up pretty well in an Ensure.  I did that for Brad using a shaker cup.  I wish I could add a video to this and I'd show you what it looks like.  Oh, I found a Youtube video of someone using Benecalorie in a smoothie.  She is long-winded lol, but shows the benecalorie around 4:15 in her video.  Kind of gives you an idea of what its like.  https://youtu.be/S_jSSBg-Z8o  

I know everyone is different and will have different successes with different things, but this was (and still is) a lifesaver for us.  

Christine,

Normal he is, better he will be.

Neck burn for me was my absolute worst pain, but the Silver Sulfadiazine Cream did the trick.

While I did have a PEG, I still drank one meal a day and was mainly on smoothies at 2 weeks post when I had the PEG popped.  I never argued with the fact I had to consume (somehow) 3k calories a day, or at least try.   While I was drinking doctored up smoothies, I was always trying everything.

I had myself jazzed up to drink lots of water and eat or drink as many calories that I could each day.  I lost 45 lbs. and did not get back to truly normal eating for 7 months.  Being hydrated and nourished will pay huge dividends.

It is a head game perpetrated on us by our own minds.  He could get better fast, and return to normal, but it is likely it will take a little longer.

Drinking one Ensure a day is not sufficient.  The mere fact that he is drinking only one is equivalent to complaining.  He needs to stay actively involved to get over these hurdles. It will get better soon.

Best of luck.

Matt

My husband sounds very like yours. Foods and medications I thought made sense were of no value to him. He would not eat. The texture, the smell, and the taste, he wanted nothing to do with it, even though he knew in his brain he needed to eat and drink to survive. He continued to struggle with nausea for awhile as well. His healthcare team was great. They really monitored his weight loss and eating habits. His recovery took awhile. He was laid out in bed for 7 weeks post treatment. He lost 40 pounds. I would say 25 of those pounds probably needed to go anyway. He needed the feeding tube, and during the worst of it, he ended up on TPN, intravenous nutrition. He would not have survived without the TPN. He was weaned off the TPN once he reached 2000 calories using the feeding tube. He is 19 weeks post treatment and still using the feeding tube. He only eats about one small meal a day and that probably has about 200 calories. Taste is starting to come back for him. 

What your husband is going through is normal. Hopefully, his eating journey will be more successful than ours. I am waiting on our first order of Benecalorie. I, too, am hoping that he will take more calories by mouth, so he can wean off the feeding tube. I am not sure if he will like the taste and texture, but I thought I would give it a try.

soonermom said:

Food Issues

The food aversions your husband describes are real.  It is beyond frustrating as the caregiver.  This does not happen to everyone but he is not just being difficult.  I have learned more about all the factors that go into appetite and satiety than I ever wanted to know.  I want to encourage you that seven months post-treatment my husband can and wants to eat most things. Some meats and dry carbohydrates can be a challenge and he still eats a lot less than he used to eat but he enjoys many foods again.  I am thrilled to be able to stop counting all his calories every day because he is maintaining his weight.  He is down over 40lbs. since treatment began and honestly I can't see him ever gaining weight again as he has lost a lot of muscle mass.  I am just thrilled that he can maintain and that he is monitoring that now instread of me.  There can be serious issues if nutrition and hydration are not maintained during treatment.  You just need to be sure that the treatment team has an accurate picture of his intake.  My husband absolutely hated the PEG in the beginning but he came to tell people that he grew to see it as his friend and not his enemy.  In retrospect he says, he would not have made it through treament without it.  Everyone responds to treatment differently and he may or may not end up needing a PEG.  If he does, my husband lived on the VHC Boost from Amazon.  It kept him alive.  I want to prepare you though that even with a PEG the food aversions and other side effects of treatment made meeting the intake goals for my husband still a challenge. As a caregiver, the way your husband is responding is really close to how things went here.  Hang in there.  I can only tell you that for my husband, although it was a very bumpy ride but he made it through and he is doing better than I ever hoped he would.  No, things are not the same for him but life is really good.  

what exsactly do you mean not the same. i am 3 wks out.when was he able to eat? have not had food down my throat in 2 months. i am worried....