New to this whole experience. Husband just had tonsils removed & neck dissection. Left tonsil and 2 nodes positive (same side) - T2/N2b. Stg 4A. Plan to start rads and chemo in about 2 weeks. I have 2 questions (well, only 2 right now!).
#1: Dr tells us that taste buds will get messed up but will come back -- maybe not completely, maybe not the same, but will come back. Doc is pretty adamant that salivary glands will be permanently damaged. What's the likelihood that he'll never produce saliva again because that's what we keep hearing. Dr prescribed salagen and plans to use amifostine prior to each tmt. He's already been to dentist for fluoride trays with instructions to use daily, forever.
#2: I understand that HPV+ cancers (esp oropharyngeal) have a better response rate to treatment. Does HPV+ play any part in determining the kind of treatment/drugs that will work best (rad and chemo)? The docs haven't mentioned HPV but he was never a smoker so I'm guessing that could be the culprit.

Hi, Claw
Welcome to the forum - but sorry for the circumstances that lead you here!

#1. If the radiation therapy is IMRT, the salivary glands will be damaged, but likely return to some level of function (eventually). If the older style of radiation therapy will be used, the damage could be more severe. Find out what kind of radiation therapy it is!

Our doctors did not use amifostine as there is some disputation over its efficacy and whether it only protects normal cells. Your doctors should have the most recent updates on the use of the drug in your husband's specific case.

#2. They should have tested for this already; ask about it. Some doctors are reticent about discussing HPV as it is a STD. Silly doctors.

Clinical trials are underway to determine the best treatment for HPV positive / negative oropharyngeal cancer. If you look at the NCCN Treatment Guidelines on this site: Treatment Guidelines

You will see the standard of care specifies surgery that is only followed by Chemo/RT if there are what are referred to as adverge features - if you do not know the results of the surgery exaclty, ask about this.

Best wishes to your husband for smooth sailing through the rest of the treatment.

Maria

1. Everyone can react differently but I'm sure he will have some permanent saliva AND taste damage. Depends on the type of radiation, the radiation field, the amount of rad delivered to saliva glands, the rad plan developed by the RO, etc, etc. Where is he being treated? I was treated 6 years ago and I have recovered appx 90% of both but that's a unproveable guesstimate because you really forget what 100% is. Recovery can take all of 2 years so patience is the key and neither of you should expect (nor get discouraged) too much to soon.

2. His cancer slides can be and should be tested for the HPV virus. So far even though studies have determined that HPV+ SSC responds better to the same Tx and therefore has a reduced recurrence rate compared to HPV- SCC, cancer docs are reluctant to alter the Tx. Do you reduce the rads by 5%, 10%, 20%? Do you use a lesser potent chemo or none at all? Who wants to be the guinea pig? After all the 1st, 2nd, 3rd and 4th goal of this Tx is to kill the cancer and keep the patient alive.

Glad you found this site. Use us as much as you need to. It's our goal to help you 2 as much as possible.

Hi claw, and welcome. This is a wonderful site for information and support. My own experience falls along the same lines as the previous posters. I had IMRT and surgery, and now at 3 years out I would estimate my salivary function at maybe 70-80%. However David is right, it's hard to remember what it was before! Taste is a little trickier as I have some permanent tongue numbness which undoubtedly affects it. But my impression from reading many posts here is that all things being equal your husband should recover his taste to the degree that he will enjoy food again. He might even get nearly all of it back; we're all different. Mainly though the process will take time and it's great that he has you!

Please keep us informed about how it's going and be sure and ask plenty of questions, both here and with your medical team.

Hi Claw, welcome to this site and best wishes for you and your husband. I too have SCC HPV+. I was not aware of the importance of HPV until I learned it is the most curable of head and neck cancers. If one has to get cancer, getting the type which is MOST curable is a good thing.

True, most Rad and Chemo docs know little about the HPV effect (my words) because it is new. The drug companies do all the research and they have just not begun to sink enough time/money into the cures.

My ENT who first diagnosed my cancer, ordered the radial tonsillectomy, removing both tonsils.

Then I went to a cancer center (Walter Read National Military Medical Center at Bethesda) where the ENT said he might not have removed tonsils and would have treated with Radiation and Chemo which they have seen great results and cured those with SCCHN. Cure. This was before we knew I was HPV+. I then kept checking the other lab results and a couple weeks later found out I was HPV+ (yippee!!).

I received a standard protocol for Oropharyngeal squamous cell carcinomas (OSCC). 35 radiation treatments of IMRT and 3 rounds of cisplatin (Chemo).

They said a number of things would happen. Yes, I would lose my taste (it came at 10 days after first rad/chemo).

Lots of ringing in the ears. It comes and goes after chemo. Starts at day 4 after chemo, lasts a couple weeks. My hearing tests showed loss at the high end in the inaudible range, so not real loss.

Significant reduction in saliva production on the side (aim point) of radiation.

Accumulation of radiation effects. After about three weeks, I began to have a great deal of pain in the throat, which continuously increased.

I completed my radiation a week ago and now I am in the home stretch to recover and get well.

My doctors advised it may be up to 9 months before taste returns.

I pray my pain will be reduced so I can put food in my mouth and water down my throat. I'm wondering myself when the pain in the throat will be reduced to the extent I can eat/drink. If anyone else has personal experience I would be interested to know.

Claw, I hope you and your husband get through this with as little pain, anxiety, trouble as possible. I will pray for you.

Sincerely,

Ken

Ken,

Perhaps you should start your own topic but I will try and briefly answer your questions.

If you only finished Tx a week ago then most likely you have another couple of weeks left before things will start to improve. In fact don't be alarmed if you feel worse than you ever have in the days ahead as it's quite common.

After you "walk out of that dark tunnel" as we say you will slowly start to recover. You will still have bad days but over time they will lessen.

Your taste and saliva will improve but we think your recovery period can last up to 2 years, not 9 months. In fact my biggest improvement in taste and saliva came at 14 months PT (post Tx) for me and I even saw a slight improvement at 24 months PT. We all react differently to this Tx but don't be discouraged if things take longer than you were told or you want.

Re the eating and swallowing. You MUST continue to swallow every day even though it's painful. it doesn't take long before your muscles just forget how to swallow. For me I was able to eat solid foods (fruit cocktail, mac n cheese, mashed potatoes w/ gravy, etc) about 3 weeks PT. Nothing tasted like it wa supposed to and each bite was small and it took forever to eat a little but at least I was reclaiming some of my life back. It's critically important that you consume a large amount of calories and water from now on. I tried to average 3000 cals a day and believe me I still didn't gain a pound until after my first year of recovery.

I also had a strong will to fight this crap and get my life back to normal and I believe it helped me in my recovery phase.

Thank you, thank you, thank you!! This board has been very reassuring to me! I'm the "information gatherer" in our marriage (to my H's sometime dismay...info overload! :), and I've scoured many threads on here.

Thank you to all who post, reply, share experiences & tips. This fills a great void.

Keep on asking, that's what we are here for.

Claw
keith in london I am about 3 weeks behind your hubby. One thing I know I walked into this treatment looking and feeling resoably health, but my Doctor was straight from the start this is a harsh treatment, well I am feeling it but every thing is for the long run I have two beautiful cheeky daughters 2 & 3 so I though bring it on do your worse. I have days were I aint so brave.
My helpful hint get a Nebulizer it helps clear the airways and is more effective than painkillers and mouthwash, I get mine from the NHS. Love the PEG it keeps you strong. keep asking questions.
My primary carer has a little black book for all the thumps she owes me when I am well.
I dream about eating nice food that taste pleasant in the future???
You can argue all day with Doctors but everyine is trying too help and you need to accept the help. The feeling of lack of control is difficult.

All the best for you and your partner.

Keep the faith. Aside from reduced saliva and no tolerance for chili peppers, my husband is fortunate to be doing very well 17 months post treatment. Keith, I hope to hear from you in a few months that you are recovering from the thumps that your carer delivered!

By the way, congrats to GB on it's Olympic successes. I am especially pleased with the individual Dressage results. Also get to see how well London is managing. We were fortunate enough to attend the games in Atlanta, and it was a never-to-be forgotten experience.
Maria