Hi Carol,

Your concern comes through as does your uncertainty of it all. Be assured that what you describe is not unusual at all. 4-6 weeks post is a common timeframe when survivors feel the worst. It will improve soon.

Take comfort the weight is coming back on and the hydration is good as dehydration can hit very quickly and knock one down in a blink.

The mucous can be removed with a suction machine, ask about that next week. I never had it but read it does pass in a few weeks.

Things are going pretty well so hang in there, more improvements on the way shortly.

Carol, it sounds like good news. Believe it or not. And the docs do have some idea from experience. The hard part is everyone is really different and if they see one thing, it may not pertain to everyone. The worst thing I heard over and over is, "I've heard that could happen" when they really know it happens often.

Even with thousands of members here, what you are seeing may not be the same as anyone or many experienced the same thing. That's what makes all of this so tough. Hang in there and I hope it gets better soon. Bless you and your husband.

Carol,
When I read your post I think I could have written the exact same thing about my Dad. Even the doctor telling him he'd see improvement in 2 to 3 weeks. When we didn't see improvement and it actually got worse we questioned the doctor and the doctor kind of back tracked and said well it actually takes a few months for significant improvement. I know how hard this is for both of you but hang in there, don't give up, this will get better.
Robin

Hi, Carol
be sure to ask about thrush at the next appointment - if that is in the mix it will add the the misery - but it can be successfully treated.
I think that some of the misery after treatment is due the loss of an active lifestyle. We walked our old dog nearly every morning - and I think that little touch of normal activity helped him mentally and physically. Maybe a little walk up and down the block would help - we should be have nice weather next week.
Is your husband a football fan? Not sure if you're in Browns territory or not, but it should be an interesting game with the Steelers tomorrow. Maybe next week he would be up for watching a game with friends or family.
One other suggestion. My husband found that it was easier for him to swallow when he was standing. He would drink his Ensures or protein shakes standing at the sink so if he coughed it wouldn't be a mess. I would leave the room until he was done, because it upset me and that upset him.
Everyone is different - we all evolve coping strategies. There will be a light at the end of the tunnel (and not a train!).
Best wishes,
Maria

Carol,
My mucus lasted until exactly 3 weeks post and my mucositis until 5 weeks post so he is in a similar range to where i was. But then suddenly it all starts to improve. I truly thought the mucus might kill me; was by far the worst sx for me. So just help him through and keep reminding him that there is a light at the end of the tunnel. It really DOES eventually go away. Also, I resisted narcotics at first but actually ramped them up during the mucus phase b/c the only thing I found to decrease it was percocet. Weird but it gave me some relief. Going on walks also helped me as I would be distracted at least temporarily. Good luck and I hope he feels better soon!

Thank you, all. I keep reminding myself that everyone is different and this does take time. Maria, I actually did think of thrush one evening because he started complaining of a new burning pain in his mouth. I peeked in and sure enough, white patches on his tongue and a spot on the back of his throat. The chemo onc. put him on Nystatin and Flucon. This was the first time he's had thrush. Hope it doesn't hang out in there!

Tomorrow is 4 weeks post tx and not much is changing. Although, his voice is suddenly getting stronger and starting to sound more like himself. The swallowing is still a no go and the mucous is not letting up.

Thanks again for all advice and experiences you all have shared. It makes me feel not so alone. You guys are really wonderful.

Carol

everhopeful64
I've been taking care of my mother since her Mandibulectomy (Jaw Bone Removal)On March 25,2014 . She is 6 months post surgery and 3 months Post RAD. My mother had the Peg but we kept pushing her to try an eat soft foods. She was afraid also of choking so The RAD Oncologist ordered a feeding test at the hospital. It seemed to ease her mind when she passed the test. She Constantly had a cup of crushed ice and a spoon that seemed to help a lot. She uses Biotene products for the dry mouth it helps a lot. It can be found at the pharmacy.

Carol, I just read your post today. How is your husband doing now?