I am hoping and praying for all the best for you. Sounds like you are keeping pn top of all those issues of nutrition and meds and all. Take care. Denise

Glad things are moving along - hope that the PEG placement is the last piece of drama!
Maria

Well, so this is what Cispaltin side effects feel like. I have to tell you it is not at all enjoyable. Even with the 3 anti-nausea meds they gave me it is a challenge to find enough motivation to eat. To compound things I have a lot of pain at the insertion point - enough so that just trying to sit up from lying down is a major undertaking, and one wrong move hurts enough to get Steve The Wonderdog running over to see what's wrong when I yell.

I'm curious from others out there who've had a PEG - what was your experience with level of pain and length of time for that to abate? I haven't been able to get out of my PJ's today. For the time being I'm going to fall back on the Oxycodone instead of continuing with the Tylenol/Advil regimen recommended by my oral surgeon.

It usually takes a few days until you begin to feel better after getting a feeding tube. The first day up to 3 days most patients are in considerable pain. After the 3rd day the pain should gradually decrease. Take whatever you need to in order to make it thru the next few days.

I hope you feel better soon!



PS... On chemo days push to drink extra water to help flush the poison out of your body.

Hi again. Just checking in. Today was 2/7 for me on chemotherapy treatments, and 6/33 on radiotherapy. I am beginning to get in the groove. If last week's pattern holds I'll have a good day tomorrow and start to fade on Friday from the Cisplatin. If things get really bad you might have to endure a whiney post from me on Saturday. But since the radiation side effects haven't started in earnest yet, fishing is a Sunday possibility. And with that prospect I think I'll be able to just man up and deal with it. ;-)

I was having a heck of a time with pain at the PEG insertion point and using Oxy to control that, but forgot about the constipation side effect and got behind on that. With the pain driving me nuts I asked to see the Nurse Practicioner today (a day early), and she removed the 3 anchoring buttons surrounding the tube insertion point. Immediate bliss and relief! She said this is the most common source of post-procedure pain and that the nurses call them - get this - "pain buttons". And with a wink she said they could only tell me that after the procedure. Who knew there was so much humor in the medical profession?

I'll sign off here as I still need to find a way to get more water in, this being chemo day. The creeping nausea is wearing on my motivation to swallow. Thankfully the med staff at UW-CCC and the folks here have prepared me to deal with that.

You are doing so well. I love your sly sense of humour.

Pain buttons!

Keep us posted.

Hi again. Just checking in again now that I'm almost through treatments. All the chemo is done (finished yesterday), and the RADS will be done Friday.

It has been quite a trip. The radiation side effects kicked in a couple weeks back and I had to cut back quite a bit at work. Finally last week I gave up on that entirely and don't plan a return until two weeks post-treatment. The fatigue was just getting too much. Also due to RADS I've been doing tube feeding exclusively for almost 2 weeks. Thanks to everyone who helped me reach the decision to have the PEG inserted before getting into these treatments -- I can't imagine how I could have withstood that otherwise.

On the activity front, I guess I've just been - as a dog-owning friend put it - "sitting in my cave and licking my paws". Not that anything has happened to me that I haven't read about on others' posts here. I've grown a new appreciation though for how tough this is and how strong you all are. Thanks for that bit of inspiration.

Now that I'm on the cusp of being post-treatment, I have tried to start mentally transitioning myself to play the waiting game again. Treatments are pretty much a full-time job, and as strange as it sounds I had lost sight of being a cancer patient and started to think of myself as being a cancer treatment patient. Part of this was being focused on the one-day-at-a-time nature of just getting through things, and part to not getting attached to things outside my control. So now I'm facing a reversal of that starting this weekend which may take some getting used-to. Not that I will mind at all being through treatments!

That mental transition is a significant one but you are well prepared for it. The relief of not having to go in was surprisingly powerful for me. I thought I would kind of miss the supportive staff at the clinic but just felt liberated.

Good luck with the next two weeks. I had no chemo and less extensive rads than some but I can say that at Day 6 after treatment I woke up feeling a lot better.

PJE, it sounds like you are doing great! We aren't any tougher than you, now you have this under your belt.

Best wishes for some smooth sailing.

Quick update: They have been giving me 2 liter saline infusions through a IV to keep me hydrated. Today - the final day of rads - they found I had a low grade fever on checking in for the saline. Combined with remarkably low white blood cell counts from Monday's lab work they are taking it all quite seriously. What this means in a practical sense is that after I finished up the last radiation treatment this afternoon I was admitted as an inpatient. Preliminary diagnosis: neutrophyllic infection. This means they don't know the precise location of the infection and are goin to use the next couple of days to isolate the source and develop a targeted treatment plan. Meanwhile they have me on a general purpose IV anti-bacterial drug, plus one to address the "flush" that has developed alongside the mucocitis in my throat. Plus my old friend oxycodone.

There is a certain amount of symmetry with this turn of events because my treatments kicked off with a 2-night hospital stay to recover sufficiently from the tonsillectomy. Lookin' like another 2-night stay to get this figured out.

Many rivers to cross, huh?