Hello all, as of today I've completed 22 out of 31 radiation treatments following surgery for tongue cancer. I had the tumor removed, and now they are shooting my tongue, mouth and lymph nodes using the IMRT technology (which has done a lot to spare my saliva glands by the way -- wonderful)...

I was just curious as to how long it takes before your mouth returns to normal (or as normal as it's going to get) after radiation. Like I said, saliva function is pretty good still(thank you Saligen and IMRT). But I'm only able at this point to each liquid/mushy foods, and my speech is slurred at times because of the "burning sensation" I can get when the sores in my mouth rub up against my teeth.

I've heard a broad range, from a couple weeks to months before function "returns to normal"... Would love to here some of your "real-life" stories... Thanks!! And thanks to all who have posted in this forum -- very encouraging to me during my journey...

Eric

Hi Eric

I also had IMRT to tongue, lymph nodes etc. RAD lasted about 7 weeks total, after week 6 had to take a week off, the pain was so bad I couldn't even get a can of Ensure down, they had to feed me through IV. I didn't have a PEG tube, and I would heartily recommend getting one put in if you haven't already.

After completion, I think it was about 3 weeks before I could do stuff like pasta. Another 3 weeks or so before I could do anything even closely resembling steak. Otherwise, it was stuff like soup, congee etc.

Other side effects, tiredness, etc, figure one month for each week of radiation, that's the rule of thumb we use here.

Hope this helps. Sounds like you are doing well, good luck.
Bob

Hello Eric, Welcome to the club no one wants to join!!. I also had IMRT after a right side neck disection. They used a muscle in my chest to rebuild my throat. It was a stage 4 tumor on my right tonsil and surrounding areas. I had no lymph node involvement or mestastisis to any other area.

I had a slight cough after 4 weeks of radiation that was treaated with a script for "Benzonatate"
100mg taken three times daily as needed. I took all my medication through my PEG tube. I had no mouth issues at all, no mucitis, no mouth sores,
and no thrush. I was very lucky. I had a total of 33 treatments.
I had a script for "Lorazepam" 1mg to be taken one per day, I also had "Hydrocone" 500mg to be taken as needed and Prozac40mg taken once per day. I ended the day with a script for a sleeping pill.
I am 8 weeks post rad and am going tp PT for my mouth opening & pech Flap to strengthen my right side. I also am seeing a phsychologist for my depression. I am finding the toughest part of this diffucult journey is after all the treatment is over.

I feel I am moving forward both physicaly and emotionally in my journey. Alot of it has to do with all the interreaction with members of the OCF
forum. There are some quality people here who regulerally offer advice to my questions. You will find the same as you continue to post.

When you reach the end of your journey you will find yourself on the board daily checking to see who you can offer support and advice to. Who better to ask than someone who has traveled the path ahead of you!!!
I also found some friends who will be friends for life. The bond is that strong. Through private emails and phone calls you will enrich your circle
of friends. There is no end to how many people that will help you.

My personal thanks to Mandi, KCDC. Dee & Packer, Donna, Judy U. Karen, Gary, Rosie. and a special thank you to Brian Hill. The founder of this site. He has a way with words, tells it like it is. There are many others who I've talked with that I didn't mention but also want to thank.

Take Care , Your Friend, Daniel Bogan

Hi Eric,
I had IMRT also and had a fair amount of pain from radiation burns, etc. They came to a head about 3 weeks post Tx. My doctor tells me salivary function return (at least the glands that weren't directly in the beam path) can take 1 1/2 years or more to recover. My salivary output is about 33% of what is was, 10 months post Tx. Sometimes I even forget my water bottle.

It's been a long haul. People told me a month for every week of radiation and that's about what worked out for me also. If you weren't a patient person before - this will retrain you.

Thanks for the information folks... Yes, this is a wonderful forum. I discovered it just as the big-time side effects were kicking in (treatments 12-15)...

Will be checking back often and will be more than glad to shine a light on the path for those coming along behind me... I would consider that an honor since many of you have done that for me...

I'll try to post "my story" in the other forum soon... it's not nearly as dramatic I guess as many of the ones on here(we caught things pretty early), but it's been an ordeal nonetheless...

Blessings...
Eric

hi my name is alfredo and i have a question id like to ask ... had tonsol cancer and id like to now if after all the treatment i went throw. if i was to go back to work wich is a outdoor construction site would the air in a city like houston with all the palution would the air cause a reaction to the cancer and case for the cancer to re aper? can any one help me out with this.. and if there is any one that speakes spanish would you come forward...

Hi Eric/AzTarHeel and others,

Keep counting down those last days of treatment!

It sounds like you are in a similar situation as mine, and just a few weeks behind me - SCC left lateral tongue stage T2(-3?)NOMO. I'm 41, never smoked, social/occassional drinker.

On 9/29/03 I had 1/2 my tongue removed, and left neck dissection. On 12/29 I finished 28 IMRT radiation treatments. So, I am now almost 2 weeks post treatment.

The first week post-treatment was rough - like the last week or two of IMRT. Very tired, sore mouth, eaing pretty much liquids only - mostly ensure, yogurt & soymilk (Silk brand is very good). I had previously been eating a lot of soups and very small pieces of food, but even solid pieces in soups & spices got to be too hard towards the end.

But! There is light at the end of the tunnel! It has been just 13 days since my last rad treatment, and it is so nice to be feeling better! With the "new normal" it is easy to be pleased at small steps! (It also is very easy to be frustrated and discouraged...)

Last night I went to a Sushi restuarant, and ate tempura shrimp and vegatables, an egg custard and picked veg!! I had (for me) a great appetite, and I did not have any coughing fits (which had bothered me a lot toward the end of treatment and the first week afterwards).

Not all of my taste buds are back - but something is better than nothing! Hang in there.

With drymouth/saliva, I found that after surgery I had a problem with too much saliva//mucus, then thick saliva and a cough. My rad oncologist gave me a prescription cough syrup because I could not stay still during the rad treatments. I now seem to have more of a dry mouth, and the cough continues, which makes sleep at night very difficult. I wake to drink water about once an hour. Has anyone else experienced this cough?

I worry about how long I'll need to take prescription medication.

Also, My post radiation recovery is not linear. I do better, have lots of energy for a few days, then get amazingly tired for a day or two (probably I am overdoing it - especially on the small # of calories I consume some days). Same with eating (also the story during treatment), I'll have a good day of eating solids, more food, etc, then slip back to barely managing a can of ensure.

Hang in there!
michelle

Hello Moises,

I have some thoughts regarding your concerns about going back to work. I worked in the environmental field and have done some regulatory work, so I have some insight but I don't want this to be interpretted as a professional opinion. Please also discuss this with your doctor and employer.

The health problems with construction work is likely to be with particle matter - sawdust, air-borne dust, paints, diesel fumes, etc. that will irritate your mouth and throat that are already sensitive due to the tonsil cancer and any treatment you may have had.

Also, you may have difficulties with the work if you are having any other physical problems due to treatment (such as tiredness, losing, weight, dry mouth, etc).

As far as the construction work CAUSING cancer, that is a great unknown. As in many workplaces, there are chemicals used that can be hazardous to your health, or may cause cancer. We don't always know what causes one person's cancer. While many people with oral cancer were heavy,or longtime drinkers and/or smokers, many such as myself, were not. So, I do not know what caused MY cancer, just as I don't know what caused Your cancer, or why some smokers get oral cancers, but others don't.

Whenever around known carcingens (cancer causing chemicals), the appropriate safety measures must be used. (face masks, gloves, ventilation, etc)

So, without knowing the specifics of your job, you are not at greater risk of getting a NEW or recurrent cancer due to the construction work.

HOWEVER, it is very important to follow work place safety rules, such as OSHA requiremnets. If you are supposed to wear a respirator, use it. If chemicals are to be used in a well-ventilated area, then do that. ETC.

If possible, check with a Safety supervisor, or county health department. If you use any chemicals, read and ask questions about the proper use.

Also, equipment operation should be a concern based on your current health.

I would be happy to email direct if more info is needed.

Best of luck to you,
Michelle

PS Brian could you or someone help translate?? thanks.

Friends,

It was I who referred Moises to the board as his dad, Alfredo, was assinged to me through CanCare, a local organization that uses cancer survivors to mentor newer patients with similar diagnosis. Alfredo is a wonderful man with a beautiful family of grown children and 3 grandchildren. He finished treatment around December 19th and is eager to get back to work and to be able to eat again...He is on a feeding tube at present.

Alfredo asked me many questions about my own progress and I explained to him that a lot of people treated with radiation and chemo are able to swallow food much more quickly and efficiently than was I.( I feel great, but still have difficulty swallowing a lot of solid food ). His primary tumor was on a tonsil, while mine was on the base of the tongue (epiglotis), so our situations are certainly not identical. Maybe some of you can write something to let Alfredo know how quickly you were able to eat again and how well you can eat now.

He is also very eager to return to work and could use a little cheering up.

I appreciate it...

Danny G.

Hi Danny,
I am glad that things continue to improve for you.
As you probably already know I had radiation and chemo only for a large tumor on the right tonsil. The tumor responded immediately to treatment and melted into oblivion by the third week. I was able to start eating (soft) regular food about a month after Tx was over. At almost 11 months post Tx, I am able to eat virtually anything. I still have a little trouble with things like bread, chips, cookies and just about anything on the dry side. I have no problems with things like hot sauce, salsa, pizza, salad dressings etc. My taste buds are fully back to normal and started to return about 30 days post Tx. My mouth is fully healed and I haven't had any problems with thrush for over 6 months. I still have a little pain when yawning and the muscles in my neck are what the radiologist tremed "textured". But, in all, a small price to pay.