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.

Hang tough, Brain! You are par for the course. You've got a good plan in place, that is, trying different things to address the side effects. You are doing fine! Don

You're 2/3 of the way there, Brian. I know it's tough but I also know you can do it!

I appreciate the breakdown. This helps so much, to know we are not alone, and when to ask questions. Thank you for sharing.

Details on the rest of week 5 and start of week 6:

So I fought the mucus issue pretty heavy all week. I did not have chemo associated nausea. I can be 100% sure, but the prior chemo nausea just felt a bit different and always ended on Thurs am. I believe this whole weeks episode was due to probably swallowing mucous in my sleep and constipation.

I tried the Mucinex and that dried my nose to the point of nose bleeds but did nothing to deter the thick ropey mucous that is running down my throat.

In the AM I hack up a considerable yellowish tinged version that eventually turns to clear as I progress into the evening.

Swishing with club soda / Seltzer water a couple times till my mouth was clear, then swallowing has been a god send.

By weekend, I was seriously feeling sick due to all the mucous & associated constipation form the anti-nausea (about 6 days with no bowel movement).

I was unable to keep a lot of food down thru the weekend, and early monday prior to chemo/rads it all culminated to me not being able to keep anything down.

Week 6:
The constant vomiting had irritated my throat to the point that I was a serious hawt mess. No longer the cheery cancer patient I begged to see a doc/NP prior to chemo.

This lady has been a godsend since day one. She was the same that came up with the new anti-nausea cocktail. She upped my Ativan dosage and gave me some morphine to get thru the day. My Liver Kidney levels were still good so we went thru the chemo and she gave me a Rx for liquid morphine and and a serious laxative. Once my bowels moved I was feeling considerably better.
She also completely reworked my scrips with a new timeline. She was very clear and I follow it to the letter. I am a little more sleepy during the day, but the pain is down and the vomiting has subsided.

I completed the Last Chemo dose Monday and only have 5 more Radiations. Super psyched right now.

The prior weeks vomiting has damaged my throat and oral cavity to the point that oral food has been a no go so far this week. I have been using BMX to get the oral pills down. I also have been eating chipped ice which alleviates some of the pain and reduces mucous buildup.

Oh boy, what a tough journey. 5 more rads...almost there. No more chemo...great. Glad you got some help. After serious "bathroom" problems, I took Miralax everyday, really made a difference.
Hang in there brian....

Just wanted to add/better document some other tactics that I have been using:

Manuka honey seems to have an antibiotic as well as analgesic affect to the oral cavity and my throat. I use three small dollops a day that I let melt in my mouth then swallow once it is completely melted.

After I wake from any significant sleep I do the club soda/selzer water/ brush my teeth blitz, I then use Aloe Vera juice I do one shot glass broken down to 3 swish/sips this is especially important when I wake at the odd ball hour(somewhere between 3-5am) or my night feed as I call it.

Smooth move tea: I usually make a cup with a little extra sugar and honey for the oddball hour. To ease the bowels for the coming day. If the oral pain is too high I may take a swig of BMX prior to feed.


EDIT: also important is I started adding water to my feeding formula... Has helped tremendously I add maybe an additional half of the container size... So 300mil formula 150mil water. Not only has it reduced bloating, but my urine is much cleared and I don't have stomach aches any more, but I do have to feed more often they have me doing 8 formulas a day so I do one every hour or so.

Brian, be sure and keep on top of your blood sugar levels. That's one downside of Manuka honey. You might consider trying 2 mg xylitol candy to see if it is the "coating" effect reducing the tongue pain. It could be as simple as some thrush areas which Manuka honey's antifungal properties would address. Xylitol has antimocrobial properties, won't raise blood sugar levels, coats the oral cavity almost like a gel, promotes more saliva production and is even being used as an energy booster. Most recent studies refute the cariestatic properties through remineralization, although the bacterial reduction has been shown to prevent or reduce cavities.

Remember the xylitol rule, "Strive for Five". Your goal should be 5 contacts per day of at least 2 mg. Somewhere around 15 mg - 20 mg has been shown to contribute to looser stools as well.

You might try bottled high PH water as the alkalinity offers more buffering to make it go down easier. Also may lower chance of bacteria stuff in the mouth.

Brain, many formulas come in different strengths. You might luck out and be able to get yours in a higher caloric density so you need less to meet your daily goals. Check with your nutritionist or whoever helps you with the prescription formula. With the higher calorie formula usually being a little thicker, you might need to add a little more water. Even with the extra water it still should be alot less you have to feed daily.

Sounds like you are doing great so far! Keep up the good work