I thought it would be nice to give an update to add to the "anecdotal evidence pool" to help others with what their treatment might actually mean to them as they face cancer and if they decide to get a PEG and a Port.
I am not completely done nor out of the woods with my rads yet. I am 23 of 35 and as of today 5 of 6 mini doses of cisplatin completed.
I will kinda update what I was feeling on by week:
Week -4) Larynscopy and Tonsillectomy performed. Found Moderately diff SCC in Tonsil and BoT. First few days were sore but all in all not too bad. light food. Took week off of work.
Week -3) had a couple rough days do to inability to eat and pain. Back to work on Tues.
Week -2) Pain mostly subsided eating most anything.
Week -1) Can Eat what ever I want
Week 0) Mediport put in on Monday, moderate discomfort till end of week. PEG tube placed on Tues, Severe lvl 7-8 pain for the first two days and some very considerable 5sh pain through the weekend. Very tough to stand ect. Full Week off. partial week on two radiation Tx which started on thurs Dec 5th. Went in to work for half days. 1st day no complications, second day on way home had a severe mucus attack and had to stop and buy a bottle of water. I was in shock, that I has a symptom already. It cleared up on the weekend, the RO said that this is not too infrequent to happen the Throat is just reacting to an initial attack.
Week 1) Monday is Chemo#1. Not sure what to expect but the MO had me get some nausea medicine prior to showing. The whole morning was pretty surreal. The give you a room close to a bathroom and assign you a urine bottle which you have to keep track of your output. They first give you some Zofran(sp?) and a 1L bag of Potassium Chloride drip. About midway thru they dose you with something that makes you pee like seabiscut. After the 1st bag is complete and you've urinated "enough" they give you a shot of Ativan (Lovely Sleepy stuff) and you get your cisplatin, only takes about 30 min. Then you get the next bag Liquid (KCL) to help flush it around and you are done. Monday Evening was ok, Tues was Miserable and Weds was the worst. Cleared up around thurs noon. I didnt vomit, but the thought of eating was enough to cancel all thoughts of eating even through the PEG... The first anti Nausea medicine Reglan(metoclopramide) was very ineffectual.
If you find yourself in this situation, do not hesitate to call your on call doc/helpline. The next med go to group is winner (Zofran(Ondansetron), Dexemethesone, Ativan, and Prilosec) I waited a week to complain and was miserable the whole week. Got very little sleep and was only able to attend work 2x 4hrs each.
As far a radiation side effects, they were lingering but not to terrible yet. Some sore spots on my tongue and the Doc gave me some BMX to fight it. I was still eating some what regularly by the weekend.
week 2) Chemo #2 with the new meds made for an easy week, with the exception of the constipation they cause. Was able to eat soft foods, but there was considerable oral pain, RO gave me Nystatin to fight thrush, she said she couldnt be sure it was starting, but better to nip it in the bud. I was good to eat Weds evening at work party( Lobster Steak ect) but by the end of the week I was a pretty hurtin unit when it came to oral eating and gave up everything but some soups(Asian Egg Flower soup and Pregresso Cream of Mushroom), most of my nutrition was from the bag.
week 3) Christmas week was actually all right. Still battling constipation, but the 1 day in the middle of vacation gave me a bit of rest from radiation, but all the travel, my parents house is 2hrs one direction, hers 1 hour in a different, wiped me out. Pretty much a couch potato the rest of the week.
Week 4) So the Mucosis is really starting to kick my rear. I can get the bags down no problem. The chemo is under control except for on new years day I slept in way to long and missed my morning dose of prilosec zofran and dextramethesone. Took almost a day to recover from that mistake. Lots of time spent at the sink spitting hacking and what not.
By the weekend I have my first bout of mucus induced vomit. Unflavored Formula isn't meant to be tasted jfyi. Not a lot to do for it except really pump oral hydration and slow down the feed rate of the bags, I also am using a saline solution in my nose to dry it up slightly. Club soda/ Seltzer water really breaks thru the mucous well. Gonna try some Mucinex tonight. Cant eat much of anything but I try the go to soups. Popsicles of all flavors are either too irritate my mouth or to chemically in taste. Couldn't finish a chocolate shake I made, but a Vanilla one is working ok.
week 5) Just starting. Starting to see some damage to the skin of my lower neck. Wife has been applying aquaphor 2x daily. Still Fighting Mucus. Will update later in the week.
