Ok, end of week 4 (19 rads 4 carboplatin.taxol). Thought I'd keep all my ramblings in one place so as to make the details of my particular journey easy to track if anyone cared to.

Still eating solid-ish food. Lots of chicken noodle soup, yogurt, even found the Dunkin' Donuts breakfast wraps go down. Keeping the hydration level up.

Managed to shake most of the cold I have had for two weeks now. Still cough at night but as you can imagine the level of overall soreness in my throat has gone down with 80% of the hacking done. Still not taking any pain meds and able to sleep.

Had a reaction to the carboplatin (flushing and splotching of the skin from the face to the waist). MO has decided that I'll be taken off of it and probably do 2-3 more doses of Taxol. The prescribed antihistamines for me to take the night before and morning of so we'll see how that goes. Mixed feelings about stopping one of the drugs as I had no side effects till this week and the flushing caused me no discomfort. I guess the risk is that the next reaction could be respiratory arrest.

Neck is doing ok. I upped the number of times I lotion per day and spread them out more. When I get up in the middle of the night I reapply. Also I have found sleeping with no shirt and keeping the covers pulled down below the burn area seems to help it heal up some over night.

Only other issue is that i developed a small sore patch on the bottom right part of my tongue. After a couple of misdiagnosis it turns out that radiation scatter is bouncing off my metal molar filling and burning my tongue. Would have been nice to know of this possibility as I would have had the filling replaced with a ceramic. I find that trying to keep my tongue below the level of the teeth this week has helped it heal a bit.

That's all. Stay strong everyone.

-Rich

The tongue will be an issue going forward. I had similar experience even with radiation shields in my mouth. Mine developed into a large ulcer. Keep your medical team informed. Yes keeping the tongue below tooth level helps. That irritation aggravates an existing problem. Great to know the cold is leaving and keep up food/water intake.

Rich,

I was told I would more than likely get a feed tube put in my side to help when I got to the point where I couldn't eat. Do you have one or plan to get one? I know two individuals in my home town with our same cancer that I have been talking to and they highly recommended the feed tube. They actually kept it for months afterwards to help with recovery. I was just curious because I don't see anyone talking about it and I thought it was routine.

Thanks,
Curt

[quote=CWB]Rich,

I was told I would more than likely get a feed tube put in my side to help when I got to the point where I couldn't eat. Do you have one or plan to get one? I know two individuals in my home town with our same cancer that I have been talking to and they highly recommended the feed tube. They actually kept it for months afterwards to help with recovery. I was just curious because I don't see anyone talking about it and I thought it was routine.

Thanks,
Curt [/quote]

Hey Curt,

Currently I do not have a feeding tube and unless things take a bad turn in the next few weeks I don't plan on getting one. I can see on the one hand how it can help a lot of people who just can't get beyond either the bad taste of food, or lack of taste, or people who have really bad throat pain. The bad taste of food for me has subsided a lot. Mostly I just get very muted flavor but still some flavor on most things and almost normal flavor on others so I can generally get most things down.

Also, I have yet to experience much more than a slight burning when I take the first few swallows sometimes that quickly subsides. I think forcing myself to eat/drink all through treatment has helped mitigate the pain itself so far. That being said anything can change in the next few weeks.

I'll throw this out there without any intent on offending anyone. From what I've read of some people's experiences the PEG can become a crutch that prevents people from taking in nutrition by swallowing and elongates the time to removal. Nothing at all against anyone who uses it to supplement but you have to try and get as much as possible down the hatch so you can get back to normal as soon as possible. This is just my opinion. YMMV.

-Rich

I had two pegs, the first one was not by choice, after losing 110 pounds, which I don't really remember getting, the 2nd one was suggested by my doctor being my chewing, swallowing and my weight was already compromised before my first radiation treatment, and I found chemo was far worse than radiation was, basically with the same type side effects, but they did not prevent me from eating again by mouth, after I was able, and don't even know of a food I couldn't eat, minus with water, spicy, dry foods. These days doctors are advocating against their use, generally, but they saved my life. I kept my 2nd tube as back-up, in case I needed it again, and did, and may in the near future with my teeth extractions, so each case is different.

Actually, I had three, the first was removed when I had sepsis, and was put back in later on. The same for the medi-port, which is usually a matter of procedure in case they are causing the infection, which is one reason not to have them long.

There is some truth in everything. I used the PEG while maintaining swallowing through almost 100 OZ of water daily and a milkshake every night. The PEG was my nutrition and used for vegetable juices, baby foods, Naked Juice, and Jevity. Had I not had the flu or battled a severe tongue ulcer I would have lost maybe 7 to 10 pounds. You don't appreciate it until you need it. My SLT group never had to force any swallowing exercises on me and I could not wait to get the PEG removed when I could maintain my weight for 10 straight days without using it. Never lost the capability.

Rich it sounds like you are doing very well. Keep up the good work and push that nutrition and hydration. If you find you arent able to drink enough water (minimum 48 oz daily) or are beginning to skimp you can ask your doc for a prescription to get hydrated in the chemo lab. By getting 2 or 3 bags of saline 2 or 3 times per week can make a huge difference. You will feel really good after getting hydrated. I would crawl into the chemo lab and walk out a new person. If you get the prescription, make sure your doc gives you an ongoing open option to get it as many as 5 times a week. James did an excellent job with his nutrition and water intake! I really think it helped make this whole ordeal much easier on him. Let James be your role model and copy his routine.

Have you tried a humidifier at night? Also how about the "breathe right" nasal strips? Radiation damage to my sinuses caused me to have ongoing cold symptoms. I take liquid benedryl sometimes to help with the runny nose. It can be drying so use with caution if you have any dry mouth issues.

Overall it sounds like you are holding your own and doing pretty well. Keep up the good work.


-------Not to hijack your thread, Rich but I do want to make a quick reply to Curt and the feeding tube. Curt, not everyone gets a feeding tube. Some are able to manage their intake enough to sustain themselves thru their treatments and recovery. Its a touchy subject that in the past caused something we called The Peg Wars. Each side was adamant their choice was the only way to go.

Thanks everyone for your insight into this. The first time a feed tube was mentioned I was totally against the thought of it until after I talked to couple of survivors in my hometown. I would rather have the strength not to have one like Rich. Go Rich!

How about we don't start the wars?

For the one millionth time one doesn't have to get the PEG. There is a Non surgical, totally painless, just as effective option...the nasal tube. The Nasal Tube is meant for SHORT TERM needs and IMO our Tx certainly meets that definition. Please anyone considering the PEG look this up, talk to your docs. I was and so was my RO at Moffitt, dead set against the PEG from the getgo. I lasted as long as I could, longer than I should have but I finally agreed to have the nasal tube put in my first week post Tx. It really did make a huge recovery difference and after using it for only 2 weeks I was allowed by my doc to pull it out myself at home. Maybe 5 seconds. Whether or not this had anything to do with it but I also ended up with zero swallowing issues.