Next Wednesday my friend Eric and I are going to meet with the Radiation Oncologist at the University of Washington Cancer Center. The UW is one of the top 20 rated cancer centers in the US by US News, and they say their radiology department is one of the nations best centers. They have both proton and neutron machine, IMRT, and other options. The Doctor we are seeing specializes in radiation for Head and Neck cancer.

Eric

Hi Jack,
In my case the side effects mostly occured at different times and there is not that many to begin with.

Food will taste like cardboard, or worse, for a while but not forever! I feel that the chemo also had a strong role in the taste issue.

Eric may develop mouth sores, but they will heal. I think that the mouth sore problem is somewhat dimished by IMRT. I was always able to swallow to some degree throughout treatment.

Eric should not suffer. They have pretty good pain management protocols these days, from topical swish and spit stuff to long term opioid 72 hr. time relief patches.

There is a high degree of probability that IMRT will spare 2 of the 3 salivary glands (probably not the one closest to the primary).

Constipation, which occurs mainly because of pain medication (also also diet) could be the worst complication actually. Maybe thrush.

He will have to micro manage these effects on his own, so he will have to be up to speed on cause, effect and mitgation/treatment. Is was very helpful anticipating what might happen and having the medications ready for it, like Candida for instance. I had very few "emergency" runs to the the pharmacy because I requested everything I needed ahead of time. I had(have) my own mini-pharmacy. It was somewhat comforting to be able to treat the side effects right away.

Radiation was very tough, never the less, and I am very grateful that I am through with it. I still have some lingering side effects but making small improvements every day. Today, most of these things are more of a nuisance or inconvenience than anything else. Some feel that radiation is tougher than surgery and I can understand their rationalization.

Some folks talk about trismus, but my understanding is that only about 5% have a problem with it. If you are able to stack three fingers in an open mouth, you don't have trismus.

I made it without a feeding tube. I lost about 60 lbs and probably would have healed a little faster if I didn't have the weight loss. In hindsite I probably should have gotten one. Today, 90 days out, I am eating anything I want, including things with mustard, salad dressing, cranberry juice, pizza (tomatoe sauce), Salsa, BBQ sauce, Cheetos, Doritos, Cokes, different cereals, etc. Did not having a feeding tube enhance my ability to swallow faster after treatment? - I don't know. By the way, I hate Ensure, Boost and all of those high energy protein things - they make me want to gag -but thats just me - others get by just fine on the stuff. I tolerated Carnation Instant Breakfast and thats as close as I came to it. For a long time it was all I could swallow.

Proton: There are a few here who have had proton treatment and hopefully they can chime in and add their comments on that technology.

My HMO has an Advice Nurse that I can call Mon-Fri from 9:00 to 5:00 which worked out very well. They would take the question to the doctor and call me back, usually always the same day, mostly within an hour with specific guidance or a called in prescription. They were terrific, compassionate, caring and extremely knowledgeable -a great system. I also used a book that my wife found called "Living Well With Cancer" by Katin Moore and that also helped a great deal.

One day at a time, one breath at a time...

I am so happy to hear that I am not the only one that can not stand the taste of Boost or Ensure. I to used Carnation Instant Breakfast my first time around. This time I was happy to use the Peg so I did not have to taste or have that thick coating in my mouth and throat from the Ensure.
I swear they put chalk in that stuff.
David

I think if he is going to have radiation around his mouth that he should definitely get a PEG Tube. My mother had one put in the same time as she had the radical neck and before radiation. As the doctor told her the Peg tube allows you to concentrate on getting through radiation and not have the additional concern of getting enough nutrients when your mouth is pretty beat up from the radiation. She lost some weight, but I am sure she would have lost much more without the tube feedings.

Here's something that my husband did during the worst of the radiation (and a month or so after) that really helped. We took some cotton cloths and got them wet and soaked them with some Tom's mouthwash (natural, no alcohol spearmint mouthwash). He kept them in a plastic bag in the refrigerator (or a cooler when he was out and about) and used them to gently wipe his mouth out when the mucous would get bad. Really helped relieve the mucous and also helped with the pain from the sores. Of course, he would keep them very clean. But both the ENT and the oncologist are now suggesting this to patients.

Best of luck to Eric (and to you...it is so hard to watch someone go through such a difficult thing).
Anita

Hi Jack,

One thing you might consider (in my opinion) is asking for scans of other parts of the body. They might have already done that. Eric may have had a lung scan? Have they done abdomen, pelvis, or head (brain)? SCC does metastisize to other areas.

Just one of those hind sight things I'm so good at.

Take care,

P.S. Don't forget the humidifier for the bedroom once radiation starts.
Dinah

Proton: There are a few here who have had proton treatment and hopefully they can chime in and add their comments on that technology.

Well i guess that's one of the rad treatments i had. it was used during several treatments in a neck muscle area where they didn't want my spinal column impacted. like other rad proceedures, i thought it was no big deal. just lay there and relax. my outcome has been very good.

best wishes.
larryb

Dinah,

Eric had a CT scan of his lungs and all looked clear. He hasn't had any additional scans other than a CT scan on neck/head and lung. He has not has an MRI or other imaging. Do you think some of those are necessary/helpful?

Thanks everyone else for all the tips. I am writing them down and taking notes. I have a list of things to buy (good blender, humidifer, Biotene Mouthwash) and all the suggestions are great. Thanks!!

Hi Jack,

I sent you an email in reply to your question. Best to Eric.

Dinah

To Gary Allesbrook....YOu were eating salsa and chips 90 days after radiation? Are you kidding me? I am almost 5 months out of radiation, had a peg tube which was remove one month ago, lost 50 pounds (that was not a bad thing!!!) Am keeping my nutrition up now with eating lots of food, primarily soft though as I could not handle rough yet! No Way! So you are doing exceptionally great. For me, its way slower, still hurts to swallow and I am in speech therapy. I am also taking in lots of Ensure Plus, dont love it, but making sure I am getting vitamins. I have to slug a gulp of liquid with anything I eat to be able to get it down with no saliva. I can not do meat yet unless it is very soft with lots of sauce or gravey. Tried chicken breast the other day and it was like cardboard. I am drinking milk and cream like never before!! I can not wait to have chips and crackers, etc. Thats a ways off for me. Good for you Gary! How is your energy level? Ever get any numbness or tingling of the limbs? Does your throat still hurt when swallowing? I could not eat a thing during radiation. I was nauseous and sick at least 5 times a day from the amnifostene. Did you have that? Do you have saliva?