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Joined: Jun 2005
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Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Jun 2005
Posts: 349
Likes: 2
From personal experience, I can tell you Mary, that nagging may do more harm than good.

A couple of weeks into my tx I suddenly didnt want to take ANYTHING by mouth...Even trying to brush my teeth would make me throwup.

I can't explain all the feelings, but for me they had to do with the following:

1) A physchological connection with the tons of water I drank during my first two days of chemo. I was also told to drink lots and may have overdone it. (It can deplenish electrolites I've heard). And the water was forever linked to the nausea I experienced with the chemo. Even today, water tastes like Jet Fuel to me. (I have no idea what Jet Fuel tastes like but I imagine it's how water tastes to me), So, Seth was forced to add Gatoraid, or flavored waters to my water even when I would take it via the PEG. This helped a little.

2) The heartburn, even if addressed with meds, leaves me not wanting to eat or drink for fear it will increase, so it may take some time to get over this.

3) When my caretaker (Seth) would nag me, I grew resentful and annoyed which increases nausea (in many people) and made the problem worse. Instead, Seth began to "encourage" fluids (more important than nutrition) and would remind me what it is like getting an IV. (Does John have a port? for IV use). If not, he should know that I noticed that mid-tx my veins dissappeared due to weight loss, lower blood pressure and overall exhaustion. So, when anyone would try to get a line going it was torture...Usually an hour or more of poking me with the needle and trying all sorts of veins until they would finally get one. These experiences helped motivate me to take fluids when I otherwise wouldn't consider it!
I'm not trying to scare him, he may have NO TROUBLE at all, just relaying my personal experience.

4) Getting a "pump" for the PEG, although not necessary, was helpful for me too. I could set it to a very slow rate and not be sickened by the fast fluids going in. Real or imagined, I recall feeling sick to my stomach by the fluids going in too fast, especially when they were cold. Temperatures can make a difference, so experiment with what's best for John.

5) Also, don't discount the impact the phlegm can have on John. It made me sick. I hated it and didn't want to even THINK about taking food or fluids (even via PEG). So, It may take a little time to get "used" to it, and past this issue. I could afford to lose the weight so it wasn't as criticle for me to stay nutriated (although even obese people need new nutrition to heal and even survive this treatment) but the body can last for weeks without food. NOT without water. Remember that many of his favorites he enjoyed before have water in them and count towards his total intake, like OJ, Milk, Decaf Tea, etc. (avoid caffeine at all costs if he is dehydrated). Talk to the Drs about his weight and make sure they weigh him on each visit to monitor.

I know that Cisplat. can wreak havoc on the kidneys if there's not enough hydration so ask about this too.

In my case I lost lots of weight (60 plus pounds) but I could afford to. The sad part is, it was all muscle mostly. I don't know if that's typical but a nutritionist and/or the Dr who put in the PEG can give you facts.

I am so sorry for the long winded reply, it just hit a recent memory nerve and I wanted to share my experience in case it helps at all.

Remember, I am not a Dr, so take this for what it's worth (which is about as much as your paying for it mind you) :-)

Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
Joined: Nov 2005
Posts: 79
Mary M Offline OP
Senior Member (75+ posts)
OP Offline
Senior Member (75+ posts)

Joined: Nov 2005
Posts: 79
Chuck, Gary, Gail and Michael,

Thank you, thank you for your wonderful responses. They are SO helpful.

I "encouraged" (your gentle word Michael) John to read all the responses posted to my question and he did. He immediately said, that's what I feel like! to most of what has been written. I could tell it made him feel less alone.

thanks again. Mary

Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
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