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#43899 09-22-2004 09:03 PM
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Hi Nicki
I was told it should take a least 20min for a can down the peg, maybe that will help, has he been given medication to help his stomach acid?
Sunshine.. love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#43900 09-23-2004 05:33 AM
Joined: Dec 2003
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Nicki,

A "port" is a central access line or a port-a-cath which is either a PIC line that is a long-term IV connection on the arm usually or a surgically implanted device in the shoulder that has a line going just about to the heart. It is used for blood draws, chemo, medication and fluids or anything administered IV. TPN is literally a bag of liquid food that is put straight into the veins. They mix it up based on caloric requirements and includes vitamins and lipids or fats. I was throwing up so much even using the PEG that eventually I started taking fluids and TPN feedings through my port at home. My creatinine was high and since cisplatin is known to cause kidney damage, they felt keeping adequate fluids in me would be the only way to continue treatment. I put in about 3 liters per day for many weeks.

There are some enteral feeding bags you can purchase from the drugstore and you put the Boost or whatever in the bag and connect it to the PEG tube with a controlled drip so it can be as slow as you want. The bag needs to be elevated and we bought a used IV pole for about $35 or you can rent by the month.

Be careful, though, because I was carrying the bag into the bathroom and as I was leaving, I hooked the tube under the door and about halfway through the bathroom I was like a dog running to the end of the leash eek . Not only did it embarass me, stop me in my tracks but it also hurt like heck. They weren't sure if this broke my ribs or the fall when I blacked out a few weeks later. I think each event broke one.

I had a lot of gurgling and digestive issues from chemo until weeks after radiation ended. I went almost 40 days without eating anything because of it. I vomitted the PEG feedings within 15 minutes of starting no matter how much I put in or how fast. I love the taste of Boost now, though.

God Bless,

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#43901 09-23-2004 09:28 AM
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Nicki-

As for cuddling with a peg, I was only married 2 months when my peg was "installed" I was very self-conscious about that tube hanging out of my tummy. I was always afriad it would leak, which it did! But used lots of tape to keep it out of the way and leak-proof. Tape it out of the way and then forget about it!! You both will need all the cuddles you can get through this time wink - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
#43902 09-23-2004 01:14 PM
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Posts: 217
Nicki Offline OP
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I'm really weepy tonight. I know I haven't found the time or the place to cry this thing out of me, and I know it wants to come out.
The 1 1/2 hour drive to the radiation center today felt tense because he'd had a bad day..and we hardly spoke on the way home. He HATES for me to ask "Are you OK?" or "Do you need anything?" all the time, but I don't know what else to say....if anything.
I got (very uncharacteristically) upset because when I finally stopped to fill up the tank, the gas price was 10 cents higher than I could have gotten back in town. I can feel tension....UGH!
I hate that!
Tom had been encouraging me to buy a nifty little sports car for 'fun.' I had resisted until BINGO - a very sweet '90 Mercedes 500 SL came into play. All of a sudden, I WANTED something that I hadn't even thought about before. My practical mind took over, and I said
"NO," mostly because I don't know how much this whole 'sick' thing is going to cost us, monetarily......and now I think that is bothering me.
I'm probably not making sense tonight, and I fear I'm whining, so I'll close.
Thanks all for being here.........
Ed, thanks for the education, too! I've told Tom to slow down the feeding, Helen, and hopefully that will help.
He was in LOTS of pain last night.....said it felt like someone kicked him in the kidneys...We think that perhaps because he couldn't drink anything for 18 hours when the PEG was placed, that too much of the chemo settled there???
200 mg of Motrin helped a lot...

Night all...
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
#43903 09-23-2004 07:01 PM
Joined: Dec 2003
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Nicki,

Be sure and have them check Tom's creatinine as soon as possible tomorrow. Cisplatin has been known to cause kidney damage and if the creatinine is high, fluids will have to be put into him soon. I hope they have been checking this and I certainly hope I am not causing you more worry.

Everything you are feeling is what we all go through. My wife and I have talked a lot about the treatment days and I was a real bear with her at times by just not talking and others even worse for the way I talked and the things I said. We tried to find ways for me to ask her for things or tell her how I was so she wouldn't have to ask. After about six months oftelling her how I was she finally told me that she didn't need to know so many details every day eek . We have many things we look back on and I doubt I really did or said those things but we chuckle now.

Weep all you want whenever you want. This is not an easy road and especially for the caregiver. You are forced to literally lurk in the shadows waiting for the next order or command while all the attention is focused on the patient.

Hang in there, it will get better.

I hope you sleep well, Dear Lady!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#43904 09-24-2004 01:43 AM
Joined: Nov 2002
Posts: 3,552
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Hi Nicki,
it is crucial that Tom drink (or consume) 2-3 liters of water every day (4-6 12 oz bottles), especially while undergoing chemotherapy. The kidneys really take a beating if you don't. The toxins will make you feel like crap also. When they would rehydrate me I would feel better almost immediately.

I have to admit that I wasn't the most congenial patient - I was ok with the techs, doctors and such but I was hell on my loving, caregiving wife. I have spent a good part of a year making amends to her. Be patient it'll get better.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#43905 09-24-2004 08:03 AM
Joined: Sep 2002
Posts: 642
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Nicki,
The PEG is not bad at all once you get used to it. I used to take walks, play golf and do just about anything else I wanted wearing my PEG.MD Anderson prescribed cans of metracal (sp.), which was made by the same company as Boost. I hung a nail on the wall at my office and I would just pull out my shirt, hang up the bag, and keep on doing what I was doing. Don't get me wrong, I was happy to see the thing go, but as it was I lost over 20 lbs. and,not being able to swallow, I don't know how I would have survived without it. It is also quite easy to dissolve pain pills and shoot them right in the tube.

Best of luck,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#43906 09-24-2004 10:25 AM
Joined: Apr 2004
Posts: 482
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Nicki, Sorry you and Tom have been having such problems. The tube can be a blessing and a pain in the neck all at the same time. I had mine stuck for a 24 hour period when I couldn't eat or take any meds. Finally got it unclogged with warm Pepsi. Tell Tom to hang in there with it, as it got to the point that I didn't want to give it up it was so easy to use to eat and take pills.

I used the Walmart brand of ensure. It worked OK for me and cost 70% less than the brand names. I used to jazz it up with Carnation Instant Breakfast. And when I got constipated, I used the tube for the prune juice and took extra ensure/instant breakfast and majically, I got diarrhea and no more constipation problems. Of course, it took 4 hours to get past the intestinal pains from the diarrhea, but you can't have everything.

To avoid the cuddling problem, I wore a T-shirt to bed. That kept the peg and tube out of the way and didn't interfer too much with the snuggling operation. Also, Carole, my wife, who put up with my grouchy times like a real trooper, said she ignored the tube. I'm not sure I believe her, but I never asked. You must make sure you get enough rest. If you don't, you won't be able to help Tom and you will be doing a disservice to yourself. So get enough rest to be able to keep going. You are both coming into the home stretch, so keep your strength up and you'll get through it OK.

And Nicki, please come here and whine. That's one of the main reasons we are here, to help each other get through the real tough times. And it is going to get worse before it gets better. So come here and whine/cry/whatever any time you want. We've all been there, either as patients or as caregivers. Your job is a lot harder than the patients job, believe me. Just like all mothers, motherhood being the hardest job in the world, you get all of the lousy jobs and no recognition for getting them done. So remember we all have the utmost respect for you and the job you are doing. I don't know how my wife, my caregiver, ever put up with me, but she did, and I'm sure that you will do the same for Tom. Hang in there, my prayers are with you both.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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