I was diagnosed with Stage IV cancer of the left tonsil caused by HPV Type 16. Surgery was performed in August followed by Radiation and Chemo the beginning of October of 2006. My treatment consisted of six weeks of daily Radiation and six weeks of Chemo once a week with the two agents--Cispaltin and a Phase two drug called Erbitux (Cetuximab). My treatments were completed on 27 November 2006.

It has been 60 plus days since I completed therapy:
I still cannot eat solid foods, my mouth in very dry and my mouth has many sores.

Sabja

Welcome to the club no one wants to join. Have you gone back to the Drs for your mouth sores? The dry mouth is a normal expected side effect. When you say you aren't swallowing is that because of the sores or is there some other reason?

Hi, Sabja, you are pretty early in the "recovery stage" at this point. The dry mouth is experienced by many people after radiation, but the sores should be able to be under control with your Doctor's help. Be very persistent about asking for medication to get rid of the sores and follow the directions. Can you swallow broths, icecream, shakes? Tell us more about what you are trying to eat. Do you take any kind of pain meds before you eat? Remember, recovery is a slow process, just don't quit trying to eat. Amy in the Ozarks

sabja,

What type of rad did you receive?

Davidcpa
Thank you for the response and below is the additional information you are requesting.

I had surgery to remove the left and right tonsil and 18 lymph nodes on the left side of the neck. Two of the 18 nodes were involved. The surgery was performed on 15 August 2006
The right tonsil was negative. The results of the tissue culture disclosed that the cancer resulted from a virus HPV 16.

I started Radiation IMRT daily treatments for six weeks with concurrent Chemo (Cisplatin and Erbitux) weekly for six weeks. Completed treaments on 27 November 2006

Currenly in recovery mode. My questions/concerns involve time frame to recover!!! Cannot seem to answers from the Doctors but they are saying everything lloks good.

sabja,

You are only 2 months out of Tx. At that stage I was still dealing with poor taste (5 on a scale of 10); severe dry mouth (3 out of 10); still ringing in my ear from cisplatin; hair still missing on the back of my neck; swallowing everything OK but eating solids was still horrible due to taste and dry mouth issues; was drinking 3 cans of Carnation Instant Breakfast VHC to make sure I got 2000 cals min a day. My goal at that time was 3000 per day; was totally off all meds before 1 month out; energy was probably 5 out of 10; and physical strenght was probably the same 5 out of 10; mentally much better probably 8 out of 10.

Now I posted recently how I was at 4 months and just the other day 5 months. I am copying that 5 month post below which included the 4 month post for you as well.

One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:

4 MONTH POST

Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

That was one month ago.

5 MONTH POST

As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.

It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.

I also just had my first birthday post Tx. Kinda wierd but I plan on getting used to those.

As you can see you will progress. How you progess is probably not in your control. I do think that by ingesting a lot of protein each and every day I haven't hurt my recovery but I'm not a doc.

If I can be of further help please ask.

Sabja --

You had about the same diagnosis as my husband, (right tonsil, base-of-tongue and two nodes but they staged him III/IV at Hopkins) -- he had 7 weeks tomoTherapy IMRT and 7 weeks chemotherapy (carboplatin only, this was just before Erbitux was available). He had a complete clinical response and is considered cancer-free per a battery of scans and tests. He didn't have surgery other than tonsillectomy of primary tumor (no ND). His cancer was also strongly HPV-16 postive.

Mouth sores should start to ease about 5-6 weeks after the end of radiation, but there is the possibility that the Erbitux, which affects the epithelial growth factor, might slow this a bit. Various agents can help -- our dental oncologist, an expert in the side-effects of mouth and throat radiation, told us one of the simplest was a salt/soda rinse several times a day. The coating agent Gel-Care (a prescription material but there is an over-the-counter equivalent made by same company called Rincinol) can help coat the sores and allow eating.

Be sure your pain medications are sufficient -- you should not be stopped from swallowing by severe pain. You may need to talk to your doctor about this -- most who receive radiation need to use fairly serious drugs, often the Duragesic (fentanyl) patch which is good for 3 days, plus an opiate such as oxycodone for break-through pain. Do not be afraid of addiction, if you have *real* pain the risk of habituation is much less. Unfortunately many doctors/hospitals fall down on providing adequate pain relief, per head of Hopkins Pain Management Center.

As for dry mouth, it is due to the radiation damage to your salivary glands. These may recover somewhat and in the meantime you shoukd be careful to use artifical salivas (esp. Oral Balance) which will in part replace the important enzymes which protect your teeth. Ask about the drug Evoxac which is the best drug to promote salivary funcion. At Hopkins it is often given to patients during treatment if the dentist notes lack of mouth moisture. My husband started to take it after treatment, his radiation plan protected much of his salivary glands but there was some damage. The Evoxac has worked well for him and he is now down to 1-2 tabs a day (from 3) -- this 16 months out of treatment -- but in order to work, it does require some salivary function to have been spared. I know someone who has received acupuncture for dry mouth with considerable success, you might look into this as well.

The fact your cancer is HPV+ is, as you know, a positive prognostic factor -- the rate of recurrence is fairly low (less than 15%, according to most studies) compared to HPV negative HNC and the cancer itself is more sensitive to radiation. My husband is now in a clinical trial for a new therapeutc HPV-16 vaccine at Hopkins, which if successful, in the future may well be a major weapon in the arsenal against this form of oral cancer.

Gail

Hi Sabja,
Sorry to hear about your diagnosis. Jack is T3N2bM0. I think you've gotten some pretty good advice here. You need to give it more time. The reason you're having trouble finding better answers on recovery times is because it's so individual and it's hard to predict exactly how it will go. Even in common things it still comes down to severity.

The drug Gail mentioned is getting good results, make sure you give it enough time to see if it works. Jack's surgeon sent him for acupunture and that really helped him - but I've also heard others say it didn't work for them. That's the problem you are going to run into - finding what works for you.

In addition to what's been posted Jack found that prescription lidocaine jel helped his mouth sores. You're still pretty early out from treatment so I'm not surprised that you are having these side effects. Just keep swallowing and it gets better with time. Start small and work your way up.

Good luck.
Regards JoAnne

Thanks to everyone that responded--Stoj, JAM, JoAnn1981, Davidpa and Gail MAC--all provided excellent advice. I guess I hoping for a faster recovery. But it is getting better each day

sabja

Gail, I could easily be wrong about this, but I recall reading that the Evoxac required three tablets per day to be effective.

Their site says "The recommended dose of cevimeline hydrochloride is 30 mg taken three times a day.", so I read the minimum somewhere else.