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Malnutrition & Dehydration

ualgal's picture
ualgal
Posts: 9
Joined: Feb 2013

For 4 weeks we've been inquiring about possibility of J getting a feeding tube or J-Peg.  The PA for our oncologist always said it was too risky, and I'm too flaky to push.  My husband has been in the treatment phase until 10 days ago and unable to eat anything more than a bit of broth or such.  They were giving him IV drips for 2 weeks due to dehydration, but nothing to correct the lack of nutrients.  Now, due to inability to urinate, etc. and ankle swelling, they have him see the physician himself.  OMG, he is suffering from malnutrition and dehydration.  Duh.  So he's getting daily IVs with vitamins....still nothing for his nutrition in the form of calories or protein.  Ankles still swollen with some creeping up above the knees.  J has lost some weight, but his muscles are non existent.  His heart is a muscle, too, so we have this concern.  J has heart disease.

I read all of the posts on this blog and see so many references to feeding tubes and dilations, etc.  We see doc today so we are having a discussion with a capital D.  

Thanks for any info any of you have regarding this type of situation.  

J's wife/caregiver

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

It really sounds like J could use some intervention to provide better nutrition than he is receiving now. You did not mention if he is having trouble swallowing from the tumor or the effects of radiation. If so, things should begin to improve approximately two to three weeks after chemotherapy and radiation therapy have been completed. You mentioned that J has some cardiac issues. You mentioned that the plan at MD Anderson was a “tri-modal” approach so I assume the next step in treatment is CT and or PET scan to determine treatment response and then surgery. So it looks like you have consulted with a surgeon and he/she feels that J’s cardiac issues can be managed for surgery?

 If that is the case, then J will probably be getting a feeding jejunostomy tube (J-tube) as part of the standard esophagectomy surgical procedure. It appears that J could use the benefit of the nutritional support now. If he is physically suitable for a major surgical procedure like an esophagectomy, the placement of a “J-tube” is a walk in the park.

 MD Anderson is clearly a national leader in the treatment of esophageal cancer so you are certainly in the right place to get the best treatment and advice for J. Given the combination of fluid retention and poor nutritional input I would be pushing for more personal time with J’s oncologist and less case management from his PA.

 I would be asking someone to explain the logic for not moving forward with a “J-tube” at this point.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor 

KYsis's picture
KYsis
Posts: 5
Joined: Mar 2013

I'm so sorry for the difficult time for your husband right now... Im guessing the docs don't want to do feeding tube because it can cause complications also. My salvation was the "frostie from Wendy's", a thick choc shake, can't tell u how many of those my family shoveled down my throat. It felt so good on my throat and doc said it was giving me nutrients as well as what they were giving Me thru IV.  Few weeks later I was able to take a cpl spoons of peanut butter a day and added the choc drink "Boost"... Everyone that came to visit me came with a Wendy's frosty in hand!! Lol. Just find something he can handle and keep encouraging.  everything tastes so awful and is difficult to swallow for months. Weight loss is very normal and I had my share of dehydration periods, but was able to make it thru without the feeding tube.  Be patient for him and with him. That's what I needed... God bless you both...j

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Sounds really simple, but you may want to try Boost shakes. I used to make shakes of all sorts for my mom when she didn't want or could not eat. 

 

Dad'sfight
Posts: 155
Joined: Feb 2013

My father had a j-tube place, but it had to be removed because of infection.  He went through the chemo/radiation without it.  The only thing we could get him to drink/eat was breakfast essentials.  I would make milk shakes at home and add a packet of that and he would get it down. My father was also very dehydrated, we hydrated him at the doctors 3 x a week and at home on the weekends. He too had diff. urinating, they said because of pain patch so they gave him flomax, has worked fine ever since.   My mother and I both were so stressed about him not eating much, but he pulled through.  I wish the same for your hubby Smile

Theresa4Dad's picture
Theresa4Dad
Posts: 20
Joined: Mar 2013

Hello,

We keep Ensure at the house. My dad is able to eat almost everything but there are times when he doesn't feel hungry, or thirsty...I am constantly reminding him to hydrate. To "ensure" that he maintains his strength as longs as possible, on those days when he doesn't feel like eating as much, he drinks the Ensure.

If you don't know the product, you can get it anywhere (supermarkets, Walmart or any pharmacy type store) and they offer different formulas for different needs but focus on protein and nutrients. Here is their web address if you need it. He said they taste good too. - Theresa

http://ensure.com/

ualgal's picture
ualgal
Posts: 9
Joined: Feb 2013

I appreciate all of your suggestions for my husband's nutritional needs.  Unfortunately, all of them have been tried without success. He isn't able to tolerate dairy products at this time. Says they are like sandpaper on a sunburn.   It's almost 3 weeks since his last treatment and the swallowing has certainly gotten easier, however that hasn't been the real problem.  The liquid/food will not go further than the GE junction.   The esophageal spasms start - we think esophagus sphinchter is trying to do its job of getting food into the stomach but has been so damaged it cannot go in the stomach. These spasms are extremely painful.  Then the regurgitation starts, not vomit, clear mucous which lasts about 20 minutes or so.  We are just hoping this is going to improve soon, so we can get on with his body healing.  

I did find a product called Protein Shot - 3 ozs. & 25 grams of protein.  It isn't milk based...more like raspberry lemonade.  Also, liquid multi vitamins are helping get the nutrients in him.  A piece of toast can be taken, though it takes about 3 hrs to get it down (this includes the spasms & regurgitation time).  If this doesn't improve in the next 7 days, we'll have to see go in to doc.

Thank you all for sharing and for providiing me a place to do the same.  It's really great to have you all.

Marcy

mmr19
Posts: 88
Joined: Feb 2010

Hi Marcy-

Sorry your husband is having a difficult time with nutrition. 

My husband, Lou, is having the same issues and it is so frustrating trying to find something for him to eat that won't cause him so much pain. 

We contributed his pain to the effect of proton radiation that ended Jan 2nd, plus ulcerations and a fungal infection that were seen with the EGD he had mid-Feb.

We know it takes time to heal, but it's been almost 3 months now since proton therapy ended. 

Thursday he had a CT scan and on Friday we learned he has mets to his lungs. He is to start chemo again on April 3rd to see if we can shrink these new nodules. He did have luck with that happening when first diagnosed in Dec 2009. 

 I'm worried about him going into chemo in such a weaken state. He only drinks a couple Boosts a day-not enough. So I was interested in the Protein shots you mentioned. Are they available in stores? I looked online and saw one called Profect that seems like it would be good. It's not only for bodybuilders like so many seem to be. But it doesn't look like it's in stores. What type do you get?

 In the beginning of our journey in 2009, Lou was unable to eat for 10 months due to different issues and complications. At that time, I found a product called Nestle VHC (very high calorie) now renamed Boost VHC. It has 530 calories and 23 proteins. Only available online. He did well with those, but this time around, they really bother him so he drinks just the Hi Protein ones from the store. He does not have a feeding tube.

The protein shots sounded interesting though. Only 3 oz, so it wouldn't be too much to take.

 Sorry to ramble on.........it's just so frustrating and heartbreaking!

Thanks-

Marta

 

ualgal's picture
ualgal
Posts: 9
Joined: Feb 2013

Marta, its called Proasis Protein Shot. I got item at HEB in Houston, but I saw them online at GNC $2.50 at HEB -2.99@ GNC.
Hope this will help your husband...it does go down very easily.

Marcy

betsi7
Posts: 22
Joined: Jun 2012

I watched the procedure this week as my husband had a previous j-tube replaced with a button j-tube.  It was done in his hospital bed without sedation and took about 15 minutes.  Of course he had an existing tract from the j-tube that was placed soon after his diagnosis and your husband would be getting an initial placement.  We are just home from an inpatient stay--but I will quickly try to post specifics on the button tube Ed received.  After being on this journey for over a year and reading many posts, I am truly amazed that people are not offered j tubes earlier in the process to help them maintain strength and nutrition.  Although Ed is still able to eat fairly well, there have been many times that the feeding supplement via tube has kept his weight and quality of life going well.  We were even able to get an organic, DHA and other vitamin enriched formula.  Now with the button tube, it is so much easier for him logistically. Feel free to contact me with any questions. Betsy

 

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