Advice/knowledge from those who have been there

Hello, my husband received treatment for stage 4, T1M0N2b, ssc of the piriform sinus.  This is located next to the vocal chords.  He had 6 weeks of chemo and then  50 radiation treatments with concurrent chemo.  He was very active before treatment and stopped running the 4th week of radiation.  He did not start exercising again for about 2 months.  Then he slowly worked back to his pre-treatment routine.  His voice slowly came back after about 6 weeks as well. He was not able to eat solid food for about 8 weeks and his taste buds slowly returned about the same time.  Like you he stopped taking the pain medication as soon as possible.  During the weeks of recovery, the Dr prescribed Ativan and this did help him sleep.  He had a prescription for Muguard which he used as well.  I think there are lidocaine mouth washes that may help with the pain.Perhaps you could speak to your doctor about options to help you sleep and control your pain better.

It is a slow recovery and sounds like you are a bit ahead of where he was in terms of taste and eating.  It took awhile to gain the weight back and have his appetite return.  He needed to see food as medicine and make himself eat.   He started exercising again slowly by walking and adding running when he felt stronger.

Hang in there!  Your body is still recovering.  I know it seems never ending and everyday is the same but you will continue to heal and improve.   My husband is now 8 1/2 years post treatment and feeling great!  

Slow process this recovery thing. Your body has just gone through quite an ordeal. It looks like you are making gains in some areas but others will catch up as you recover. If pain meds help ease your throat pain I would take them and make swallowing without the pain or less pain your reality. You would feel much better till your throat heals up and you wouldn't be concentrating on it. As you said even swallowing is painful and we do it often so don't make yourself suffer as it is just temporary. As far as MS- Contin is concerned one of the side effects is nausea among others which may affect your appetite.

The possible side effects of MS CONTIN are: • constipation, nausea, sleepiness, vomiting, tiredness, headache, dizziness, abdominal pain.

Can you get your docs to substitute another type of pain med to ease your throat soreness if you think the Contin is giving you issues? It will help your sleep also and rest is a big part of recovery. As far as being tired easily I remember I slept a lot and was tired a lot but tried to stay active as well as I could. This is all part of the recovery I am sorry to say and it will get better for you as time goes on. It is just the mental thing too of remembering how you just used to jump up and do what you wanted no problems but now tire easily. This will get better but this whole recovery is a slow process so figure weeks and months not days and weeks like other illnesses. Another thing that happened to me for a while was a complete loss of confidence to do anything that involved any complications. Raking leaves or running a vacuum was easy and gave me exercise but repairing anything which might involve complications or extra processes like a plumbing repair or mechanical repair which I had done many times before worried me and I avoided them. For me and many others, it seemed like forever but after afterwhile, you will notice that the around-the-house chores or the walk you took that made you so tired are not bothering you much now and you are getting back to your old self. It just requires patience and your body is healing and the process can't be rushed. I remember it was a big deal just for me to get outside in the spring finally and do a little yard work picking up sticks, etc. If you are not gaining weight at least you are maintaining your weight hopefully. In the healing process, it takes a lot of calories to support the healing process. I had a feeding tube and the nurse navigator told me to get at least 6 containers of feeding solution in a day or I would lose weight. So I don't know if I've helped at all but just hang in there, manage your pain you will feel much better, eat as much as you can, and if your body tells you to rest listen to it and rest. Wishing you the best on your recovery-Take Care-God Bless-Russ

My husband had swelling and a sore throat but not many sores.  Everyone reacts a little differently to the treatment, but we do think using the muguard really helped.  The Magic Mouthwash also had some lidocaine in it, I think and he was encouraged to use this 30 mins before trying to eat or drink.  It took 8 weeks before he could try anything besides ensure.  He also struggled with nausea for 6+ weeks after treatment.

The Dr also said protein consumption would speed healing.

Your body does need time to heal and it sounds like you are making progress.  Keep taking good care of yourself and hope these suggestions help.