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inspector1
Posts: 2
Joined: May 2013

Hi all, I have been lurking/learning for the past 5 weeks. 

The stories and information here have been a huge help.

My wife is in week 5 of 7 of her treatments SSC IVA BOT (chemo once a week and reds mon. thru fri. weekly).

Here is where I need help, she will only make a token effort at taking in nutrition (her ENT rec. a PEG prior to starting treatment, we had it along with a trach.) or hydration. She tells me it is because she has no tast or appitite. Doesnt want to try to eat - it wont taste or feel right. 

I understand (as much as I can, I am not getting zapped from both the inside and out), but I am so lost as to how to help her through this. She HAS to have nutrition and hydration. 

Are there any magic words ?

We have a strong support group, family and friends. Prayers inbound from all over and I still dont know what to say or do.

Noellesmom
Posts: 1291
Joined: Aug 2010

Your wife does need hydration and nutrition.  If she has a PEG, by all means use it for both but she also needs to work on chewing and swallowing to keep muscles and joints working properly for the wonderful day when she can and will eat and drink again.

Recruit the nurses/doctors to help you with this and don't fail to take advantage of the help home health services can bring.  Probably a bit early for swallow therapy but remember, when the time is right, it does exist.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Inspector,

I wish there were magic words to suddenly make your wife want to eat. There aren't any. Telling her she needs to eat won't change anything and just irritate her. I know because I was there.  She's at a point in treatment where the pain and side effects are peaking and she'll feel this way or worse for the next 6-8 weeks. 

She has a PEG so now is the time to use it. A bag of water on slow drip will do wonders to make her feel better. If you have liquid nutrition, that along with some extra water will help. I was unable to eat from about the 4th week on. I lost too much weight and had a PEG put in the same day I rung the bell. I can tell you I felt much better getting some food and hydration into me. However, it's vital that she continue to sip water to keep her swallow working. A call to her team to light a fire under her butt can't hurt either.

Positive thoughts and prayers.

"T"

fisrpotpe's picture
fisrpotpe
Posts: 1330
Joined: Aug 2010

I so totally agree with T

 

IV fluids is a must at this stage, all you have to do is ask for them and they will give at any time. i suggest the 2nd, 3rd and 4th days after chemo each time. 

 

sipping helps with the swallowing long term, she does not want to loose that automatic swallow by not doing so for several weeks. 

 

i did not have the peg tube back when i did mine treatments as it was not an option. i can say i wish i had. 

 

john 

Ladylacy
Posts: 468
Joined: Apr 2012

Your wife definitely needs to use her PEG tube.  She needs the water to stay hydrated and help push the chemo out of her body.  She also needs the nutrition to fight this beast.  If she doesn't she is going to end up in the hospital on IV's.  She definitely needs to understand this.  Head and neck radiation, as we were told when my husband started his treatment, is the worse when it comes to radiation.  Get the radiation doctor to talk to her and her oncologist and the nurses.  And she also needs to swallow to keep her muscles working to swallow.  At this point in her treatment, and I hate to say it, it will only get worse. 

Try to talk to her honestly and maybe other members of the family can too.  See if she will read the messages on this forum.  Hydration, nutrition and even pain medication is needed to get thru treatment for this beast.  I am sure she is down right now and it is very understandable but she has to help herself to get thru this.

Wishing the best -- Sharon

debbiejeanne's picture
debbiejeanne
Posts: 2357
Joined: Jan 2010

it is true that eating doesn't taste or feel right but she still has 2 eat and drink.  if she doesn't eat by mouth, then use the peg tube.  at least she can keep up with hydration and nutrition with he tube.  it is still very important that she keep swallowing tho b/c if she doesn't, she'll lose the ability to.  even if she just drinks water all day, everyday, that is good.  also tell her that if she doesn't stay hydrated she will end up in the hospital with iv.  tell her that her feelings are completely understandabe but it is critical that she keep up with her nutrition and stay hydrated.  good luck and please keep us posted on how she's doing.

dj

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

and LOTS of hydration....in the past a good meal was something to look forward to.....these days, it is her job.  She's not working for a pay check, she's working for her life.  Eating for pleasure is passe, eating now is an occupation, be it via her mouth or her tube.  She absolutely needs to take in as much water as she can....if she can still swallow, then that's the way to do it.....gotta keep those swallow muscles working for future use.  This is TEMPORARY.....she will finish treatments, and start to get better just like the rest of us. 

Sometimes our caregivers had to take a hard stance, even when their hearts were breaking that we felt like crap, and we were in pain....if she doesn't want to take in nutrition and hydration, let her know you're going to tell the Dr., and don't back out.  Let the Dr. tell her what the consequences are for holding out.  "It doesn't have any taste"....and "I'm not hungry" don't cut it during treatment.  It took me 11 to 14 swallows to get down a can of Ensure Plus....I didn't have to have another for 4 hours.....it took 15 minutes tops, to pour it down the tube....just saying it doesn't take much to get what you need in. 

If she's having other problems, like nausea....the Dr. needs to know that, too.  There are MANY drugs out there other than what she might be taking.  If she has mouth sores (or her mouth and throat are super tender), there are meds to handle that also....Her Dr.'s need to be kept in the loop in order to make this treatment as comfortable as they can.  It's no walk in the park, as I'm sure you've noticed while reading posts....but so far most everybody has made it to the end of the tunnel and come out into the light. 

p

PS....glad you finally posted....it's nice meeting those who come out of the lurking tent....LOL

CivilMatt's picture
CivilMatt
Posts: 2903
Joined: May 2012

Inspector 1,

Welcome to the H&N forum fellow lurker, I am glad you found us, but sorry you are here.

What everybody said times 2.  By the way I am a stage Iva, scc, bot, also.  My wife found this site a good month or two before I got zapped and drank the Erbitux, the big thing I came away with was hydration and nutrition had to be maintained at all costs.  This was the recommendation from those who blazed the trail for me.  They were right and I followed their directions to the tee.

The only area where I differed from many was on eating (I could do it, but  I did not like the feel).  I went through my PEG phase and thought it worked pretty slick, 2 cans of jevity hung high and go to sleep.  Need to take a pill, no problem, crush it up and squirt it in.  The texture of food disgust me to no end, but smoothies were my friend.  After the PEG, I lived on smoothies until food felt better.

It is just  plain hard, but you have to do it.  You have come a long way and with a little more effort  you will be finished.

Matt

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Unfortunately, the only magic wors are these.... Harsh and simply put... "If you don't eat and drink..., you die".

Taking in calories and hydration at the point she is in isn't for taste, enjoyment, t anything like that.

It's purely for recovery and survival....

Like others have mentioned, if she has the PEG she has got to use it, and she needs to exercise her swallowing muscles occasionally as well. It would totally suck to go through this ordeal, and come out the other end cured of cancer, but not be able to swallow....

You need to help her resolve this issue as best you can as soon as possible... Involving her, you and her medical team, or be what means neccessary to make her realize that it's a matter of living or dying...

Best

John

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Dang, I got so excited about getting on that I posted twice, LOL...

John

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Welcome !

Ditto what all of my other co-survivors and caregivers have said......(If you haven't already, maybe read some of these posts to your wife ?)

Since she already has a PEG, she should be using it.

As I always say when this issue comes up:

It would be a damn shame to survive the cancer (and she WILL), only to die of starvation.

Please keep urging her to use the PEG, keep using the swallowing muscles, and if needed, ask the medical team to hook her up with an IV for fluids.  She won't believe how much better she will feel with more fluids.

Wishing you both the best !

 

CherieLW's picture
CherieLW
Posts: 420
Joined: May 2013

I completely understand from your point of view as I'm going through the same thing with my dad.  I ask if he can't taste anything, why not just chock down this nasty ensure crap anyhow that doesn't taste good even with tastebuds?  But... he insists he can't.  He has tried, but just can't.  I'm sure it has to be very difficult to love food and not be able to enjoy it at all.  It's something we can only imagine.  The only thing keeping him drinking fluids is knowing that he doesn't want his organs to shut down.  It is crucial for your wife to sip fluids and be monitored by docs.  My dad was using sweet tea, until the docs said nothing caffeinated (I guess it can dehydrate).  He tried unsweet tea, but cannot drink it. Now he sips water, but still complains that it doesn't taste good at all.  He may be getting a PEG tube and he will use it.  We should find out something today :( Hopefully your wife's doctors can stress the importance of hydration and nutrtition.  She needs to know she has to do this to survive.  Things aren't going to taste the same for awhile she has to push through it! Wishing you luck and praying that she strives to get bettter! Hang in there!

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

Sometimes a real life example helps. My husband had the PEG and still does. He would not drink or do the swallow exercises but the PEG kept him alive. Now he can swalow liquids but chokes on most foods. I can't tell you how many frights I have had from food or pills stopping his ability to breath. Then he gets paranoid and won't eat that food or take that pill again.  So he will have the PEG for life. You do not say if the doctor prescribed nutrition. Most prescribe Jevity. Insurance pays for it and it is delivered to your door with a pump to drip it in slowly while you sleep. Our RAD oncologist explained that the cancer takes all the calories so you must get excess calories to maintain your weight. My husband recieved 3000 calories a day and still lost weight. Express your concerns to the doctor. And as John and others have said, sometimes you have to get stern and nag.

My prayers are with you and your wife.

Debbie

inspector1
Posts: 2
Joined: May 2013

thank you all,

our chemo is every Tuesday and we get extra hydration and nausea drugs on Fridays. This seams to help combat the 3rd day (after chemo) blues.

Our RO, insisted that she eat and hydrate - likened it to medication, may not taste good but its good for you. She is trying to increase her intake today. I am so proud of her.

The RO did tell us today that she is doing very good for this stage of her treatments - pain, nausea etc. are not severe at this time (thank the Lord)

thanks again for the sharing of your experances

dales2loud's picture
dales2loud
Posts: 45
Joined: Sep 2011

Is there anyway possiable to get your wife on the computer or does it also make her ill? Have her read these comments or read them to her, let her know she's Not alone and that there are folks who have survived what she is going through and only want to help.

Prayers,

Dale

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