I am over 2 years out and everything other than me being 2 years older is just fine, in some ways better believe it or not. I started back bike riding appx 4 months post Tx and it was a challenge but thankfully along came tax season and I didn't get to resume until May which was 8 months post and boy did that extra time make a big difference. In no time I was riding with my old group and I have never looked back. One thing that I was surprised at was the fact that even though my dry mouth at that time was pretty bad (I pretty much couldn't stray far from my water bottle) I could exercise normally and only required fluids like pre Tx.

My taste came back it seemed in spurts. I remember a spurt after 4 months; again after 5 months; nothing noteworthy until 15 months and then again around 23 months. I would say it's almost normal as is my dry mouth as the 2 seemed to improve at the same time.

I didn't have any surgery nor the Peg.

I did test positive for HPV 16 and I suspect his slides would have also.

His recovery will most likely take way over a year and it will be months before he really feels "normal" again. He will have good days followed by bad days and eventually the bad days will go away.

Many of us also dealt with a bout of depression so be on the lookout.

Many of us also suffered what is called Hypothyroidism where the thyroid is basically burnt out by the scatter or direct radiation and for some reason it doesn't crap out until months post Tx. If your not familiar with the symptoms just look it up.

Make sure he gets a good amount of calories now and for the next year or so. I tell people 3000 calories a day and don't worry about weight gain, as it just doesn't happen.

Tell him not to get discouraged. Tell him that just about everything will return to normal but it may take a lot longer than you both want it to.

You need to congratulate yourself but at the same time realize that this ordeal is only partially over as the recovery can take a long time. The sooner you can both get adjusted to this new normal life, the better.



David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.