I was diagnosed with T3, NO, MO squamous cell carcinoma at the base of my tongue. I have now completed 7 weeks of radiation and 3 chemo treatments with no more scheduled, so now I am on the mend. From your experience with similar cancer could you tell me:

1) How long will that sticky saliva feeling last in my mouth? Does it ever go away?

2) How long before my taste buds will likely come back and do they ever return to normal?

3) How long before the feeding tube can be removed and I can begin eating solid foods again?

4) Did your voice remain hoarse for some time and if yes how long before it returned to normal if ever?

5) Did you have problems sleeping at night due to the flem buildup in your throat waking you up to cough and spit it out?

Thanks for your comments.

Terry

Hi Terry,
Congratulations on finishing treatment - that is a first big step. I will attempt to answer your questions in the same order. Bear in mind that we are all different and respond differently to treatment so your experience may not mirror mine.

1. If you had IMRT, you will probably have fairly normal saliva function in about 18mos -it is a slow process. If not then you will have dry mouth issues for life. The really sticky stuff (which results from radiation damage of the salivary glands) should just up and vanish in a month or so and with most of us, rather suddenly.

2. My taste buds started to recover at about a month and slowly got better until about a year and everything pretty much tastes the same as pre Tx. The chemical taste from the chemo lasted quite a while.

3. I didn't have a feeding tube but it depends on when you can start swallowing again without excessive pain. I started eating solid food at about 1 month post Tx. I phased in soft foods at first. When you are able to input enough calories orally to sustain you they will take out the feeding tube.

4. I was really hoarse post Tx and it slowly improved over time to where it is almost the same as pre Tx. It was very froggy in the beginning. Some actually completely lose their voice for a week or so.

5. Yes. It tracks the thick saliva from the radiation damaged salivary glands. It was a miserable time - it WILL pass. Proping yourself up a little, maybe some decongestants and get a humidifier, will help.

If you had 7 weeks of radiation you will normally have 7 months of recovery to get back to a reasonable place. The things you mention here should pretty much subside by 2 months.

It was a good three weeks post Tx until I hit the turning point. Radiation continues its full unabated effects until about then. Progress is typically measured in three week increments.

Hang in there - PATIENCE!

Hi, Terry,
Congratulations on finishing your treatment!
I am now four and a half months post radiation - did not have chemo. Mouth is very dry, but carrying a water bottle is not that bad.I had IMRT, so I have hopes of leaving the bottle home one day.
I can taste probably 50-60% of "normal" - waiting to taste sweet, so many things depend on it. I eat mostly vegetables, lots of yoghurt, I can eat croissants with lots of butter. Cheese started tasting good last week - hooray!! I stated on yoghurt smoothies, then cream soups like shrimp and mushroom (first without the shrimps and mushrooms) at about five weeks post radiation. Recovery seems so slow when it is happening, but things will get better, only you'll have to count weeks, not days.
And, the mucous will disappear in about six weeks. Mine turned white and then clear and stopped being a big problem - all of a sudden I did not have to spit into a tissue every two minutes. i could not believe it was gone! It happened very quickly.

As Gary said, patience is unfortunately what you need. Good luck!
Leena

Thanks Gary and Leena for your replies.

Gary, you commented that if I had IMRT for 7 weeks it could take 7 months before I was feeling better. Did you mean 7 weeks or months? My Doctors suggest it could be 7 weeks.

Did either if you find blood in your salive frequently afther spitting up that sticky mess?
Again my Doctor does not seem alarmed, but I was wondering what your experience may be. Maybe the blood business stops when the spitting stops?

All the best to you both,

Terry

Terry,

You read correctly, 1 month of recovery to 1 week of radiation. I believe this is the minimum although many of the symptoms become tolerated easily. I was eating fried chicken 3 weeks after radiation, with lots of water. I finished radiation Oct 8, 2003 and last week had my very first meal with no water until after the meal was done. I didn't think that would ever happen, by the way. My taste buds still get a bit strange eating the same food.

The real thick brown goo and the blood are both from the severe damage to the mucous membranes in your throat. It is normal and one day you will suddenly realize it stopped completely.

Congratulations on this important milestone!

Ed

I hacked blood and chunks of dead tissue for a while post Tx - perfectly normal - even after the thick mucous thing stopped. It's just part of the healing process.

I started feeling better at about 3-4 weeks post Tx. It actually got worse just after the end of treatment. It's kind of a cruel joke with this thing that one would expect that you would start feeling better immediately once the radiation is switched off but radiation is the gift that keeps on giving.

Doctors giving you "blue sky" crap like that are doing you a diservice. You need accurate information to make decisions about finances, applying for benefits and other things. Stick around here - we'll tell you the straight story. I just told my wife what they told you and she rolled her eyes back and laughed.

I am a bit ahead of Ed and my taste buds are fine today - although they always ask about it when I go in for my 6 month checkups. I enjoy food even more now than before Tx. Not being able to taste and swallow for so long was one of the hardest things to deal with and one of the things I dreaded the most.

I took over a year off to recover from the treatment. Physically I may have been able to jump in a little sooner but my ability to focus and stay on task in my consulting work was very difficult at first. My thinking was pretty scrambled. I am doing well now though and keeping very busy.

I can only imagine what could be worse than radiation and chemotherapy - being hit by a bus maybe?

Once again - patience!

I only had IMRT so your recovery may be a little different than mine.
1) The sticky feeling only lasted about a month after radiation
2) The taste buds started to come back about a month after and slowly improved. I'm 7 mos past treatment and taste about 75% of most things except Chocolate @50% and Garlic @0%?
4) MY voice was hoarse for about 3 weeks then it got better and then after 2 mos it got worse. Very froggy in the AM and deep. I was told I have that sexy deep voice like Rod Stewart. After 6 mos its almost normal. A little deeper and froggy some AM's.
5)Lot of sleeping problems during treatment and about a month after treatment with the Flem. Ask your doctor for medication for the Flem. It helped a lot. After about a month most of the Flem went away.
6) The 2 weeks after radiation where my worst feeling. Skin was burnt, energy way down, eating still a problem. But then each week it got a lot better. 7 weeks after was feeling a lot better and pretty much eating normal. The mouth sores went away and could eat a lot better.

Terry, congratulations on finishing. As Gary said, we all react differently, but the paths are very similar. Here's my experience:
1. The sticky feeling improved for me, but I still have it to a small degree. Especially noticable in the morning.
2. My taste buds are not responding very well. I don't taste anything the way it used to be. Sweets are especially untasteful. Most things I taste not at all. I eat just because I know I should and my stomach starts talking to me. But there really is no big desire to eat.
3. My peg was removed 5 months after rad ended. My oncologist wanted to keep it in until I had at least a month of eating only solid food and my weight had stabilized. I lost 25% of my body weight during treatment and he was concerned about that. I also was given Procrit to rebuild my blood count, especially the white cells as they were very low. I was a prime candidate for a major infection, hence, Procrit to build the white cells.
4. My voice is still hoarse. It does get better and worse one day to the next, so I haven't given up on it yet, but it is always hoarse. The dry mouth seems to contribute to the hoarseness and that is something I think will always be with me, even though I had IMRT as well. I get some saliva, but the tonsil beds are always dry and cause the hoarseness, I think.
5. I had the flem issue for about 4 weeks. It has never totally gone away, but at least I only wake up once or twice a night now, not every 45 to 60 minutes. I also had bloody spit, but I think that was due to the tonsilectomy as much as anything else.
Hope this helps. It does get better as you go along. My rad and chemo doctors said 2 years til all of the changes that are going to occur will occur and what you are left with is as good as it will get. Will pray for an easy recovery for you.

Terry,
Just wanted to wish you a speedy recovery, having had no chemo or rad I cannot offer advice but can still give my best wishes. On that note...Johns' post caught my eye re: Rod Stewarts "sexy voice" did you know that he had SCC removed from his thyroid? I just saw a biography on him & was surprised to find he also went through this battle..victoriously as I wish for you also.
Take care,
Maria

Here's a few more celebrities who are among us:
http://www.oralcancerfoundation.org/people/arts_entertainment_people.htm