Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Max, you're doing really well, 4 lb weight loss is nothing. They don't even start getting nervous until you've lost at least 20. I didn't have a PEG and lost over 60 lbs, 30 of which I left behind which is fine with me. I forced myself to eat and mainly lived on Carnation Instant breakfast (it has almost that same amount of calories as Boost) and Hagen Daz milkshakes (sometimes I would add heavy cream and/or a package of instant breakfast to that as well. Experiment with different flavors. It got rough in the end and I used a lot of narcotics to numb the pain for eating and drinking but I kept my swallowing mechanisms intact and was eating regular food about 3 months post Tx. Strangely, some things I could still taste - not many though and it's wierd being able to smell something and not be able to taste it. It was one of the worst things about the treatment for me - I love food and eating. It doesn't have to be inevitable to get a PEG but you have to be totally committed to toughing it out and many can't. The pain can be very extreme and the surgery (if you had it) may also play a role (which I did not have). It sure got boring being on a liquid diet for so long and it sure didn't help the constipation issues (Norma posted some great suggestions on that issue in another section of the forum). It took almost all of my waking energy each day for the eating and drinking process. I would watch my wife chug a bottle of water and was green with envy.
One word of caution though - when your throat is really burned and blistered the slightest amount of acidity (even from the mildest and diluted juices can burn like hell). Saline mixtures can have the same result. I had one book recommend a technique to make a salt water rinse - very diluted - and I couldn't even tolerate that.
I couldn't stand Boost and Ensure - gagged me, but some here love it. I heard the trick if you are taking it orally is to be sure it's good and cold. With a PEG it's probably better at room temp. Eating first thing in the morning when there is a lot of mucous buildup it is risky for the gagging issue. I would wait a little while after arising and maybe be on your feet a little while before trying to eat or drink. Timing is everything.
I also used a humidifier, slept propped up a little and constantly had a water bottle present - room temperature is best for the water. Carbonated water can help if you can tolerate it. I ALWAYS used a straw as well. Be very careful while eating and/or drinking not to aspirate into your lungs - you can develop pneumonia from that. Small bites - small sips. Experiment with different viscosities.
Talking about timing, when you take showers, or anything that requires energy, that has to be carefully planned out. I found that I had a spike in my energy level in the early afternoon so that's when I would shower each day. Energy management is critical especially when your caloric intake is at the bare minimum.
2-3 liters of water is equivalent to 4-6, 12 oz bottles of water a day - but remember that there is water in food as well and that also counts towards the total fluid intake. As Norma also said, stay hydrated, especially if you are taking chemo. It will lower the toxicity to the kidneys. Anti-acids will help also, like Pepcid AC (Famatodine). Joanna recommended "Puffs" brand tissues for the mucous as well. Some have had success with suction machines.
Yogurt, with acidophilus in it, can have additional benefit with helping reduce the thrush problem but your mouth chemistry from Zerostomia will be really wacked out for a long while and conditions for yeast infections will be optimal.
You are wise to keep a log of your food and water intake each day.
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)
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