Hi again. Today is my 3rd full day at home, and I was down to sleeping only 2 hours (instead of the 4-6 from Monday). I have to say I'm feeling better every day, enough so that I may attempt to walk Steve the Wonderdog tomorrow -- keeping in mind, of course, Maria's very excellent advice not to overdo things. He's a 90 pound Labrador, so Deb will back me up in the event he sees a rabbit that needs chasing...

My eating is still soft stuff - broth, juices, applesauce, ice cream shakes and the like. I tried some Cream of Rice hot cereal yesterday morning but the little granules felt like they were getting stuck everywhere around the wound and it presented higher-than-normal swallowing pain so I gave up on that. As a consequence I've lost about 5 pounds since the surgery last Friday.

The oxycodone continues to keep the overall pain level manageable, but I am running low and face the choice of whether or not to ask the Doc for more on my follow-up visit this Friday. I have been taking 5mg (down from 10 in the hospital) every 4 hours. I think I *might* be able to get by without it, but worry. What do you guys who've been through this kind of surgery think?

Peter,
Welcome to the club nobody in their right mind wants to join! I'm glad you're doing so well. In deciding about asking for more meds, just 'cause you have it doesn't mean you have to take it; it might be good to have some on hand and stretch out the doses as you need it less and less. I have to admit, when I was at that stage, at one point I just said "enough." Early on someone mentioned feeding tubes. During chemo-rad I had one and although I loathed the thing (for no particular reason, it wasn't painful, after I recovered from having it put in, and it wasn't much trouble to maintain although others have had different experiences) there were a few days towards the end of treatment when I was happy to be able to pour a couple of cans of high tech food right into my stomach rather than have to swallow more. I never lost my ability to swallow but at the end of treatment it wasn't fun. Best of luck going forward!

No reason to suffer pain. Ask for refills at a minimum and more if you feel the pain getting any worse. Try protein powders. They have lots of calories and are plenty nutritious too!

Peter, are you dinking enough? Weight loss that fast after getting out of the hospital could be from dehydration. If you had eaten a lot the day before surgery, I could see it. 16 ounces of water weighs about 1 lb. I drink 24 ounces an hour at the gym to keep up with what I lose. Even driving across town in the Dallas summer burns about 32 ounces in a half hour with the air conditioning on.

The protein powder Don mentioned would help you heal a little quicker and perhaps add calories but it could reduce appetite at the same time. If you go that route, find a powder with maltodextrin and the appetite won't take a hit.

Didn't have the same surgery but needed Oxycodone for a couple of weeks after surgery then again during radiotherapy. I had no trouble stopping it. There were no addiction issues.

Pain and stress are contributors to delayed wound healing.

Thanks all for the advice about re-upping the oxycodone prescription. I did just that at the 1-week surgical follow-up visit this morning. However -- and this is good news -- my surgeon recommended trying simultaneous dosing of Ibuprofin at 600mg 3x/day and Tylenoal at 1,000mg 4x/day. He told me these work in different ways and so can be taken together, and the combination has been found to be very effective for throat pain like I'm having post-surgery. I'll let you all know how that goes, as this could be useful for others with similar surgery.

The post-surgical pathology results were mixed. On the positive side the nice clear margins they got on the tonsilar tumor mean they should be able to reduce the radition dosing to that area, and thereby lower the probability of long-term swallowing and dry mouth problems. Also, they down-staged me from N2b to N2a because they only found a single cancerous lymph node -- not the three they thought they saw on the scan. The bad news is they detected evidence of extra-capular extension, meaning my follow-on treatment will involve chemotherapy (Cisplatin, weekly) along with the radiation. But I've gotten this far - why not make it even more interesting, huh? With this change and the advice I've gotten here, I think I'm more amenable to a PEG, especially after the swallowing difficulty I've already had from just the surgery.

The tumor board will meet on my case next Wednesday, after which I will have more specifics on their recommendations for my treatment plan. I'll give an update then with any questions I can think of, but in the mean time thank you all so very much for your support and advice.

Hi Pete,

Just remember to do your swallowing exercises religiously while you are on PEG. Dry swallows too.

Thanks for the update, Pete! The reduced radiation field will help your recovery and long term side-effects!
Maria

Hi Pete,

I had my surgery on Feb 10th and started chemo & rads 4/4 soI am just a little further down the road than you are at this point. I just finished my 4th week of radiation and I highly recommend the PEG tube. I had mine placed while I was in for surgery originally as I needed it while my free flap graft healed. My doctors tell me I am doing great for how far I am with radiation (no sunburn yet but the mouth sure is tender), but I did end up losing 9 lbs last week when I went full time back to the tube. Had to up the volume of Isosource and Liquid Hope (the two liquids I am using), and I am doing much better.

I am having weekly infusions of Cisplatin as well. We skipped last week due to an increase in the tinnitus in my ear. The two main side effects of Cisplatin (so I have been told) are peripheral neuropathy and hearing loss. Since my hearing was compromised just prior to my original surgery (chemical reaction) my doc has been watching for this. So, we took a break and are back for infusion #4 Monday. The good news is that if you have this reaction to Cisplatin, it usually goes away after you are done with the treatment. I figure alive and deaf is better than hearing and well, you know.

I completely agree with Uptown - you need to stay ultra hydrated. Aloe and coconut water help (I get mine at Trader Joes), extra free water (what you drink besides the water you drink with formula), keep swallowing every day. I can only tolerate water now due to the radiation, but I don't stop.I still swallow all my pills with water, but that might be more difficult if more of your throat is treated.

Best wishes to you as your treatment moves forward,

Heather