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New added fun

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

Well, 

We have new added fun to our adventure.

Rob will be getting extra fluids 2 days a week. He will also get a port in the chest and a feeding tube. He has lost 14 lbs in 2 weeks and they don't like that.

Port goes in Friday, today is consult for feeding tube. He has totally agreed to the feeding tube as he sees how tough it will get to swallow. Monday and Tuesday he eats great but falls off the rest of the week. We really tried to avoid this but he gave it a good fight.

They also put him on Morphine ER twice a day and it really helps with his tongue pain. 

We are officially half way through this today.

Prayers and hugs to all. Hope you all feel great and enjoy our beautiful days. Spring is time for renewal and new beginnings

Sandy

 

jcortney's picture
jcortney
Posts: 410
Joined: Sep 2012

Sandy,

Your lives will be easier with the port (makes infusions so much easier) and the feeding tube.  Half way thorugh is a major milestone, every day from this point foward you are on the short end of the calendar!!!

Congrats and keep it one day at a time.

Joe

fishmanpa's picture
fishmanpa
Posts: 1112
Joined: Jan 2013

Hi Sandy,

Sounds like the team is on top of things. As you know, I did get a PEG  at the end of my treatment and by then I was behind the 8 ball. I hung in there without getting a port but my veins were shot by the end. In fact, when I went Monday for a follow-up, they had trouble tapping a vein for blood/IV fluids. She got my blood but couldn't get an IV line put in. Turns out I didn't need the fluids but still... chemo/rads takes a toll on your entire body. By the 4th week, I was going in every morning for extra fluids. Now, with the PEG, you'll be able to hang a bag with water and he can get hydrated while he relaxes. Just make sure Rob continues to swallow water as often as he can to keep up on the swallowing. If they're saying he can eat, at least try to get some food in as well. While drinking water helps with swallowing it doesn't use all the same muscles as other liquids and soft foods utilize. 

Managing the pain is the other part of the equation and it sounds like they have a handle on that too. While I can't say the next half will be any easier or less painful, it will be more managable. 

Hang in there! You have the finish line in sight! You'll be there before you know it!

Positive thoughts and vibes

"T"

hwt's picture
hwt
Posts: 1880
Joined: Jun 2012

T brings up a good point, be certain not to become totally dependent on the feeding tube...got to keep swallowing! Sounds like you've made some good choices to help make the last leg of this a bit easier. I had a feeding tube from the getgo and still lost 65 pounds. Can't imagine where I would be if I hadn't had it. A year post tx next week and I still drink an Ensure every morning. I have plenty of energy, not sure if that helps but figure it isn't hurting. Weight loss leveled off several months ago and now I quit losing.

Candi

Ladylacy
Posts: 468
Joined: Apr 2012

My husband had a PEG tube from August 2010 until May 2011 and without it, he couldn't have survive.  Being always underweight but a good 60 plus pounds the doctors were already concerned.  Believe me he was using the PEG tube by the end of the second week of radiation.  It was a good thing he had it because the radiation completely closed off the back of his throat which we didn't find out until they did a laryngectomy in March 2011.  He has now had a PEG tube against since May 2012 due to a spread of the cancer to the cervical of his esophagus.   As for the port, I wish he had had one inserted before everything started.  He did get one due to his veins collapsing and the IV fluids he was having to have.  The second go round of chemo we asked about a port, but they wanted to wait and see.  He didn't need one the second time even though he had 7 weekly chemo treatments, he did stay hydrated this time.

He can swallow and he can eat some, it is just getting him to do it.  Hydration is very important so make sure he gets plenty of fluids.  And trying swallowing some each day because it keeps the muscles working.

Sharon

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

The port does make it much easier and actually faster also...

You do whatever you need to do in fighting the battle...

Depending on how long they keep the port in, will determine after treatment, trips to get it flushed every 6 - 8 weeks...

If you're going through HELL, keep going... "Winston Churchill"

JG

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Sounds like things are going as expected. Things will be much better with a port and it seems PEG is needed due to eating issues. I think we are on same schedule. Today I just crossed half way point of 7 week daily chemo-rad therapies. You can keep up on my daily posts at http:beatdown.cognacom.com

Good luck

don

cureitall66's picture
cureitall66
Posts: 852
Joined: Aug 2012

Sounds like you are moving along. He will be thankful for the Port and PEG....less poking, and then a better way to get nutrition. Ensure and Boost and 2.0 were the survival tools we had to keep him going. Lost 50 lbs through tx....now at 5 months out, he's eating better, just not gaining like we'd like to see.

Definitely keep the swallowing up.....he must use this ability. If he doesn't he will be sorry later. The advice we got here was you "use it" or "lose it". It is important to make him realize this.

Your half way done....it will get tougher...but, he will do it! Keep him comfortable and check in here for advice.

~C   

phrannie51's picture
phrannie51
Posts: 3663
Joined: Mar 2012

to the halfway mile marker!!  That truly was the point that I started seeing a glimmer of light at the end of this dark old tunnel.

The port will be a godsend....no more heating pads, slapping arms, searching for veins, hoping they'll hold up etc etc etc....it makes getting IV's, chemo, hydration, a transfusion if he needs it...makes everything so much easier....a little wham bam thank you ma'am, and vital needs start getting met. 

Good to hear he's going to get a tube, too....it's the rare bird who gets thru this without one.....just keep on him about swallowing something everyday, and then let the grand majority of his nutrition bypass that sore throat, and go straight to his tum.  His weight loss will ease off, and he'll feel stronger too...a much better place to be...physically and mentally.  (I hated being so whimpy I couldn't walk half way around the pasture without sitting down).

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

Are you flipping me the bird..., LOL ... Oh, you said I am a bird.

Well I did tell you taht I am head of the abi-normal clan...

JG

CivilMatt's picture
CivilMatt
Posts: 2899
Joined: May 2012

Sandy,

What a way to celebrate the half-way point, a PORT and a PEG.  Each will definitely make treatments easier and more manageable.  I use to kick off my shoes, lay back in the recliner and drip, drip, drip off to sleep.  This will make chemo work smoother too.

Remember you have to keep swallowing; it matters and is important to your speed of recovery.

In your corner,

Matt

robswife87's picture
robswife87
Posts: 178
Joined: Mar 2013

than last week. 

He gets th PEG tomorrow and can start using on Friday. He is eating up a storm right now. Got the right pain meds and lidocaine gel he puts on his tongue when he wants to eat. 

He will keep eating but we will make up the calories with ensure, etc. when he jsut can't take no more stuff down for the day.

He ate a club sandwich, almond chicken and rice, egg roll and a bagle today. Last week he was in so much pain he just couldn't eat. 

Port comes friday.

He was outside digging up the septic tank for a cleaning and hanging out with my mom all day. She will take him for his PEG tomorrow so I can go to work.

I can't believe the difference since last week. I thought he was never gonna make it through this and now I know he will. The extra fluids and steroids are keeping his energy up. 

Thank you all for your wisdom through the tunnel of hell. Without all of you we wouldn't know what to ask for from our docs and nurses. You are all the best and sorry you had to go first to find this all out, but thank you.

Sandy

fishmanpa's picture
fishmanpa
Posts: 1112
Joined: Jan 2013

Hi Sandy,

I read that Rob was outside digging up a septic tank and I'm thinking.. "No Way!"... then I read they are giving him steroids and I thought. "ahhhh no wonder!" 

I was given steroids at chemo infusion and they had a similar effect. I had a lot of energy. I also had trouble sleeping and unfortunately a rather negative reaction in that I developed "roid rage" from them. This is a negative emotional and often negative physically, as in aggressive, reaction to the steroids. It was mostly reported among body builders using steroids for muscle gains. I got very irritable and aggressive. I also began cursing up a blue streak and I definitely don't have a potty mouth. Poor Marcia thought I was losing my mind and essentially I was! 

When I described what I was feeling, they took me off the steroids. I was back to myself in a few days. The only ngative was that I was now feeling the fatigue from the rads and chemo but I'd rather sleep and feel tired than curse like a sailor and feel like I wanted to fight the world ;)

Keep an eye out for any unusual behavior from your husband and let your team know. I didn't know what was going on or why I felt the way I did.

Positive thoughts and prayers

"T"

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