Advice/knowledge from those who have been there

LASNYDER

I am 6.5 weeks out from finishing 30 radiation treatments and 5 Cisplatain Chemo treatments for recurrent Vocal Cord cancer. While I am making progress I have some questions for those that have been down this road. So first the positive items!

My taste came back about 5 weeks in. Most everything tastes normal

The constant phlegm in my mouth has decreased a lot so I dont have to spin in a cup all the time

I am regaining a small bit of voice above a whisper. 

I am eating meals, supplemented by a couple boosts for the calories every day. 

That said here are the issues I am having. 

I still have a pretty sore throat, swallowing anything including spit. This has persisted for a while at least as long as I have been off pain meds- Does anyone have an idea how long it takes for the burned spots inside my throat to heal? It's becoming tedious day to day and makes eating not much fun.

I still have zero appetite- I have to make my self eat. I weaned of MS- Contin that I was taking 3 times a day for about 6 weeks. I did this over a 8 day period, 2 pills for 4 days 1 pill for 4 days then off. I have been completely off now for 5 days. Could the remnantes of the MS- Contin be causing this. 

I tire or get winded really easily, prior to radiation I was very active , speed walked and played tennis. Now im a mess and a weakling. Do I just need to get back at it or is this a normal side effect. 

I sleep terrible! part of it is the sore throat that no amont of advil helps. I doze at best, have crazy dreams. I dont take naps during the day. I would say I'm getting about 4-5 hours a night. It was better when I was on the pain meds. 

Gaining weight is next to impossible even though I am taking in 2200-2400 calories a day. Lots of protein and carbs. 

So if you have had radiation to the vocal cord area and have advice I am interested to see what you say. Thanks

Larry

 

DarcyS

Piriform sinus cancer

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!  

LASNYDER

DarcyS said:

Piriform sinus cancer

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!  

Thanks Darcy

Thanks for the ecouragement and informaton. I am waiting for the day when the sore spot in my throat has decreased. I feel like that is the real key for me, no throat pain means I can eat what I want, heal faster and sleep better. Did your husbands throat pain remain constant for some time as the raw spots from radiation healed? It's my hope that by end of next week I am getting some relief from this. It's funny how a nagging sore throat 24/7 can make you so uncomfortable. 

Congrats to him for so many years free, I hope the same for me!

Larry

wbcgaruss

LASNYDER This Is A Very

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

Remington25

Mine was different but....

I know your swallowing is difficult but I found when I upped my protein intake to 150+ grams per day and 2500 calories a day I began to feel much better and less fatigue.  I got to the point I had a minimum of 160grams of protein per day and tried to get as close to 200 as possible. It might you as well.  I'm 4 weeks out but only had 20 radiation(36gy) and 2 chemo (docetoxl) treatments. I am only 30 days out of treatment and just this week have some minor taste sensations coming back but absolutely zero sweets register on my tongue. Glad to hear you have your taste back so soon! 

DarcyS

Sore throat

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.

Logan51

11 yr. 10 month survivor

Wish I had it as good as you, Larry. My first food was pancakes w/lotsa butter & syrup about 2 months post-tx. Course, I had a FT before tx began. Why did they take you off pain meds? They kept me on Hydrocodone for a couple months after tx. Might want to ask Dr. For me it was trial and error. Had no problem w/Ensure, my first non-FT ingestion by eating the old-fashioned(!) way. Trial and error.

I had 60 Gys to upper throat and 68 to bottom. 70 is typical max, I think. I never really had much pain in the lower throat that I remember. Mouth pain was dominant.

Again- tell your Dr. about the pain because they are supposed to deal with that so patient does not suffer.

LASNYDER

Thanks All for the advice

My Dr never put me on a feeding tube so I have been through all this by eating protein shakes and now eating food. I am going to stop by GNC and pick up a tub of Whey Proten and get my intake up as high as I can. So why did I get off my pain meds- simple answer is i didn't have any pain at all. not even a little. I was 40 days out of my last tx and tired of the way they made me feel. I will say I am now 1 week free of them and still having a few withdrawl symptoms. For those reading this and still on daily narcotics the odds are good you will experience the same. 

retlessness sleeping

crazy dreams

night sweats

diharrea

nausea

Most of that is past now and I feel a little better all the time. I understand at this point the food is the best medicine and will attempt to get 2500-3000 cal plus 150-200 g protein a day. I am down from 155 to 137 lbs and that is a huge fatigue driver. 

I have magic mouthwash but the real problem is that the sorness is down in my throat so I would have to swallow it to get it on the sore spot and thats not very effective. I am walking 2 miles now about 4-5 days a week and I plan to start a light work out regimen this week to build strength and stamina. Just carrying a box up a set of stairs makes me winded. I cannot believe one year ago I was skiing 7 hrs a day in Montana. Oh to be back there soon. THAT is may daily driver along with spending time with my family. 

My first throat cancer was diagnosed in 2013 on my vocal cord. I had surgery and I was cancer free for 6 years. My voice started declining again in 2019, had surgery again in Jan 2020 to remove a new small spot and put a keel in my vocal cords for 40 days. All was well until 10 months later when they found cancer hiding on the backside of my vocal cords they couldn't see on a endoscope. then the radiation and chemo started. I had been spoiled by the surgeries bucause it was in and out and I was back to normal within in a few days. I knew rad. and chemo would be different but had no idea what the healing process would be like- just idealistic I guess. It is my hope that all this will cure me of this once and for all. I like my Dr at University of Florida Proton center in Jacksonville but felt like a lot of things were glossed over. 

This discussion board is a world of help and I appreciate all the responses. This is a crummy club to belong to but knowing I am not alone is maybe some of the best medicine. I find myself melancholy often when I see pics around the house that were all better times. Thanks for all the encouragemt

motorcycleguy

LA,

Overall, it sounds like you're doing great - very soon after treatment!

I had Nasal Cancer, so I can't address the voice issue.

Your taste coming back seems incredibly soon - so you must heal up quickly.

Treatment takes a lot out of a person - so don't get too worried about being tired and the weight, just yet. It took me a while to get energy (and lost pounds) back on an upward trajectory.

Hang in there - you sound like a person who will be back on track, relatively soon; just give yourself a little more time!

I wish you the best!

mg