Hi Don,

It is HPV 16+. Signature updated.

Roger

Roger,

How you feeling now. Mine was on Jan 20, and feel better bow.

Hi neversmoke,

Thanks for asking! I am glad you are feeling better. I am not bouncing back quite as fast as I did after the first round, but am feeling better all the time. It's hard to believe I've already been home for a week!

I had an appointment with the surgeon on Friday. He said I am doing great. He removed the staples from my face. Some of them really got my attention as he removed them, but most came out quickly and painlessly.

My biggest challenge is sleeping. Sometimes I am fine, but other times I can't quite attain a position that is comfortable and allows me to breathe easily. Then, about the time I am sleeping well I will wake up with a coughing fit. It is improving with more good stretches happening, but it is a real drag. I have tried heat and moisture exchangers on the trach. They work but almost make it too moist with lots of very distracting gurgling and bubbling. I have a humidifier running full bore all the time so the room air is pretty moist.

More information than you wanted to know I am sure, but I felt like sharing. I hope you continue to improve and feel better each day!

Roger

I have an appointment with the chemo and radiation oncologists on February 13 to begin treatment planning. I am also supposed to have a swallowing evaluation on that day, but it's not been scheduled yet. Having been through radiation before, I absolutely dread having to go through it again, this time with chemo as icing on the cake. I know it is important. I will get through it but I am not looking forward to it.

Roger, this time around you are much smarter. You know all the medical lingo, have your treatment team in place and know how this ordeal works. This can work to your favor! You know how important your intake is and how to manage it. Every single day you need at least 2500-3000 calories and 48-80 oz of water. (You should be doing this already.) Plus this time around you have us in your corner Do you know if you will be getting less rads this time around? I seem to remember a couple members who did rads more than once having slightly smaller doses of rads the 2nd time. If so, then this could be a whole lot easier than it was the first time.

Hang in there!!! We will help you get thru this.

Usually it has to be above 50Gy, if not more, to kill SCC. I had 50Gy IMRT, and 50Gy Proton for two recurrences, but I also had HD-IORT, 12Gy and 10Gy, as a boost, which is equivalent to 3 times that in IMRT, and a pec flap, so was able to receive even more radiation, although the radiated field was smaller, and it also depends on the maximum dose toxicity level of the structure or nearby structures involved, and prior radiation.

Thanks so much. It makes a huge difference to have the support of you great people this time around. I am not sure what the dosage will be. I have not talked to anyone at all about it yet. That would be great if it could be a little less intense this time around. I am not sure what the first dosage was.

I do make sure to take a lot of water, but unless my math is wrong my PEG feedings are calibrated at 2340 calories per day. That sounds on the low side, but it was set up by the dietician. I haven't started to take anything by mouth yet. When I do that will be added in to the calorie count.

Roger

A quick update. The swallowing test was disappointment. I was not able to get any fluid down at all. Too much swelling still. The therapist wants to try again in another month. In the mean time I am to try working on tiny sips of water or crushed ice. I have had a little success with the water sips, but most of it is not going down.

The radiation and chemo oncologists both agree that it's too soon to start treatment yet. It will probably be about a month. When it does happen, it looks like 6 rounds of Cisplatin and 30 hits of radiation.

Overall they tell me I am doing great in my recovery from the surgery. I don't feel great though. It's taking a long time to bounce back, and I feel pretty sluggish much of the time. I am generating a lot of anxiety for myself worrying about the swallowing. I need to chill out and give the swelling time to subside, which seems to be taking forever.

Roger,
Thanks for the update. Sounds like things are going along but not as fast as you would like. You are going through a lot of treatments so it is going to be a longer road to get past this all.

Since you need to get rads/chemo the throat is going to get hard again so adjust your outlook past the end of that set of treatments. It is a long way away for sure but focusing on the longer term will make the daily ups and downs go by a bit easier.

The PEG is essential to get the liquids and nutrition down.

Hang in there, Don

Hi Roger, it will take time to recover from this surgery.
Kris just started with very small amounts of water to swallow. He used a syringe to squirt 5 - 10 mls directly to the back of his mouth. Then he tipped his head to get gravity to help the liquid , well I guess, almost flow down the oesophagus. It took a few weeks of practice to get this right. Be patient and keep practicing.
Tammy