While I am happy to report that I completed 3 mega chemo and 35 radiation treatments (seven weeks) six days ago, every day this week has been a struggle. Of course, oncologists and nurses said it was likely for both this week and possibly next week before I might feel better. Pain got very real during the last week. Went on both Hydrocodone and then low-dose, long-acting Morphine. These cause constipation. My radiation oncologist provided a bowel treatment protocol, which gradually increases in medication, concluding with Magnesium Citrate. That saved me from an ER visit to check for obstruction by a day. I am sticking religiously to that protocol.

I lost most of my beard below my ears and some from ear-level. I lost my hair in the back of my neck. Oh, I have throat cancer and the front of my neck after 35 rads now looks reptilian. I can probably scare children! My sister can't look at it. Burn creme is really helping.

The three chemo treatments were cisplatin and the last one was 11 days ago. Chemo blitzes me. I get chemo brain, have trouble focussing, and everything seems a bit unreal. I think KristinS recommended I not do the third treatment due to my report on hearing impairment after both of the first two. But, my wife and I decided, after consultation, that we should do it. Haven't lost my hearing but still impaired. For those 1% that this happens to, please see https://www.cancer.gov/news-events/...isplatin-hearing-loss-sodium-thiosulfate for information on hearing recovery treatment.

My P.E.G. tube really came in handy. Have only had shakes for weeks (exceptions were pudding and apple sauce during chemo), though I could have burritos into the third week. Since my throat is so sore, I have been taking additional water, prune juice, nutritional feedings, and liquid meds through the tube.

Hope some of this is helpful, DavidDH

Glad to hear you're getting through and that the further chemo was okay! It was definitely something to discuss with your doctor, but your decision to make, and glad you were able to. ((hugs))

The radiation will continue its work for a few more weeks, so don't be too discouraged if the pain and need for meds continues for awhile longer. Some heal faster than others (and I sure hope you're one of them), but it's good to know that it's perfectly normal to still be having difficulties for some weeks to come. Saves frustration and panic, which none of us need! Those PEG tubes are a lifesaver, for sure ... but if you're also swallowing liquid nutrition, you're ahead of the game on that one ... you've kept your swallow reflex and that helps a LOT.

And the neck should get better. I remember looking at mine and wondering how it could ever possibly heal. (And I do work with small children, so scaring them is rather an issue, LOL. Any kid who ends up around me learns compassion or at least not to be too blunt! You ask, I'll answer! ) But, amazingly, though it's never felt quite the same since (I think due to the surgery causing some nerve damage too), it actually looks almost normal. Can barely see the scar from the neck dissection (you have to know to look), and it just looks a bit stiff there, overall. Not bad. I had a therapist when it was healed enough who helped with massage techniques and stretching techniques (for the neck and tongue both) that helped a TON with breaking up scar tissue, with keeping fluid build-up away, and all sorts of things. If you encounter problems down the road, that's an option a lot of us find handy. She was a speech and occupational therapist; they did work with stroke patients too (ran into a lady I knew while I was there) and lots of other difficulties, so they had a wide range of techniques available. Worth every penny.

So very glad you're done with the big treatment and can focus on the healing now! Thanks for posting how you're doing! (And thanks for listening and then going with your doctor and your gut on what was right for you. That's always the best thing.)

KristenS

sounds exactly how things went for my husband. he is 8 months from his last treatment which was the same protocol as yours. He has most of his life back to normal. He lost his sense of taste for sweet, can't eat really rough foods like popcorn, isn't having to drink water all the time for a dry mouth though he carries a bottle of pop with him just in case. His voice is back, etc. There is light at the end of the tunnel. You are down the path now! Best wishes.

Thank you, Connie! DavidDH

Wonderful response, KristinS! Thank you for all of the encouragement and thanks for sharing more of your story.

I was lucky. I think it was the radiation oncologist who provided a long list of daily tongue and neck exercises that I did 3-4 times/day; I could swallow throughout every week perhaps because of the exercises. I was never restricted to the PEG tube, but have relied on a great deal over the past 3-4 weeks. The major symptoms of treatment, such as vomiting, rather severe (but colorful!) neck lesions/scarring, painful coughing fits, and deep fatigue, only hit me during the last week of treatment - and, again, mostly just after the last RADS and until just a day ago. It would have been so much harder if those symptoms had hit me weeks earlier.

I was also lucky to have my wife handy and helpful and my daughter (and two dogs) throughout most of the entire ordeal. I met others who did not have regular caregivers, or their families would work but are unavailable during the day, so they're on their own; others had to keep working to maintain health benefits. I was concerned about aspiration pneumonia because I am an asthmatic (with histories of pneumonia and bronchitis), but the thick mucous formed - again - only in the last weeks and I have learned well over the years how to expectorate. My morning routine of light exercises, meditation and jogging 1-2 miles with my dog kept me going even as I think I could only jog .25 of a mile in recent weeks. Helped prevent neuropathy, too, along with Cymbalta.

I intend to stay with this list, adding updates and trying to help whenever possible. And, I am definitely interested in donating and perhaps doing walks with the organization.

Hugs to everyone, DavidDH