Low Dose v. Regular Dose Radiation

That's great news.  I did this exact treatment.

Re: rads...  I was 41 when I did my 6 weeks.  Basically didn't have much happen for the first 2 weeks.  Next two weeks I started to get a sore throat and a little irritation on the skin of my neck.  Last 2 weeks, a little more sore throat...had to change my diet a little bit (avoid spicy stuff and acidic things).  Lost hair on my neck and left side of jaw so had to shave my beard for first time in like 10 years.  Fatigue became common.  I'd have days where I would just crash at like 8pm and sleep through the night.  2 weeks post treatment were just a little more of the same. More sore throat, more external irritation.  Had a common nerve issue where if I looked down I'd get a "shock" in my neck and down my spine.  There's a name for it (which I can't remember)and it's temporary, but it scares the crap out of you the first time it happens.  Lasted 2 weeks.  Also, started to get "blisters" in my mouth and throat toward the end.  Really small one that would just show up literally over the course of an hour.  I could pop them with my tongue or finger and they would instantly stop hurting.  

Lost my taste somewhere around the 3-4 week mark.  Started experiencing dry mouth around the same time.

By 1 month post I had most of my taste back, by 2 months both taste and saliva were back to 90-95%.

Re: the surgery...you'll likely end up with some nerve damage on your left side that will require some PT for your shoulder.  It's very common.  I couldn't lift my left arm above shoulder level.  After PT, I don't have any problems with it, full range of motion back and strength is the same.  You'll also experience cramping and stiffness in your neck.  Par for the course.

 Drink a lot of water, all the time.  Use the salt and baking soda rinse a LOT.  It helps a lot.  In my opinion, that and the water consumption were the keys to what I consider to be my fairly easy time through it.

Continue eating solid foods as long as you can.  They can give you some numbing stuff that you drink before eating if that helps and you need it.  I tried it once or twice and didn't like the numbness in my mouth so stopped using it.  Most of my discomfort was managed with ibuprofen.  I worked at my office job all the way through, missing only a few days after my surgeries.

Brandon

In my case I had TORS along with low dose radiation.  What was explained to me was that the dose is high enough to do the job but may lessen the bad side effects normally related to full dose.  Had it in 2012 and my teeth haven't rotted yet.  They will give you fluoride trays to use for the rest of your life, and you should use them.  Like the other poster I too got my taste buds back in a few months.  Also had a right radical neck dissection which caused pain in my right arm.  That also went away after a year.

Consider yourself lucky by having the TORS.  Without it they'd have to break your jaw to get down your throat. 

Wish you well going forward.

Mattsjc2020 said:

Thanks

Thanks for sharing your experience. I just started 30 days of radiation today (60 Gy) and am a little anxious about the side effects. I know it can vary, but it's good to hear how it went for you. I'll remember the point about staying hydrated. I think you're right about how important that is. 

Is the 60 Gy I'm getting considered low dose? 

BeagleDad said:

Been researching this, MAttsjc2020

To be sure..I am in no way privy to medical information other than what I readon the internet.  But when searching for low dose radiation, I see in one study that patients were given as low as 30 Gys.  However, those patients also had 2 doses of chemo.  Not sure what your treatment plan is, but mine is TORS followed by low dose radiation.  I am to undergo my surgery 11-24 and about a week after that, I am told, we should have the lymph pathology report to determine further treatment options.

Luckily, mine was discovered "early" but again, without proper medical training or experience, those are just words that sound good to me as compared to what the standard treatment is w/o TORS.    

I'll be glad to add to this once I have further information from my doctors.  Either way ... good luck to you and please keep us posted.  

Don (Beagledad)

There have been several studies where the factors of HPV and other markers of the tumor have responded well with the low dose rads. They were done with 30gy and 2 rounds of chemo instead of 3 where the majority came out with fewer side effects. I had Tors with 54gy for 6 weeks and then high dose to the BOT site for the final 3 treatments. The advance of teatments have come a long way and and this treatment could be very beneficial to the ones that qualify. Thanks for the update.

big G said:

Low Dose

There have been several studies where the factors of HPV and other markers of the tumor have responded well with the low dose rads. They were done with 30gy and 2 rounds of chemo instead of 3 where the majority came out with fewer side effects. I had Tors with 54gy for 6 weeks and then high dose to the BOT site for the final 3 treatments. The advance of teatments have come a long way and and this treatment could be very beneficial to the ones that qualify. Thanks for the update.

Thanks big G and Don for your responses. I don't think my treatment (60 Gys) will count as "low dose." I heard the number 74 Gys thrown around somewhere, so I was hoping that some of the lighter side effects discussed in this chain might be headed my way! 

johnsonbl said:

Warm/hot drinks:  Yes, I drank a ton of tea and coffee.  Toward the end I'd have to drop a couple ice cubes in it to cool it just a bit.  

Teeth/gum issues:  I had to have my wisdom teeth removed prior to radiation which is common.  The radiation 'can' make you more susceptible to decay as you lose some of your saliva generating ability.  Honestly, I've not had a single cavity since radiation.  They should give you some flouride gel to use during/after your radiation treatments to help keep your teeth strong.  I don't really do anything differently regarding oral health other than see my dentist 2x per year as opposed to 1x.

Swallowing:  The structure of your throat will change post surgery and post radiation, that's a fact.  How it impacts you will remain to be seen.  During the peak of treatment when I had some swelling I'd get some water that would decide not to go down and it might come up my nose if I drank to fast but other than that it really wasn't anything too annoying.  I think continuing to eat and drink as normally as possible is important as it keeps those muscles engaged.  They'll likely do a swallow test pre and or post treatment to be able to look for issues.

Taste/weight:  Yes, the loss of taste is a real thing and it does impact you.  I did find myself eating less just because it "didn't taste good".  So instead of eating two plates of something delicious I'd just eat one.  Toward my peak of discomfort I had to change my diet a little bit...just a shift to more soft foods really.  Like avoiding potato chips and things with rougher texture.  I also avoided acidic things like ketchup and salad dressings and soda...those tended to burn a little bit.  Otherwise I really ate pretty normal.  Thick things like chunks of meat and breads can have a tendency to get stuck when your mouth is dry.  So you may end up having to take a sip after every bite to help those things down.  But some saliva will return and in my case I'd say I'm at 90-95% of where I was before treatment.  I did lose weight...about 20lbs.  Looked great post treatment.  Now Covid has packed all that back on.  lol.

Yes, I think in the grand scheme of things the folks who have to do chemo/radiation do have a rougher time.  But this is no walk in the park either...and everyone is different.  I consider myself extremely lucky in that none of it really slowed me down too much.  None of it is without risk however, risk of recurrence, risk of other complications of treatment, etc...  Keep your eye on the end game and do what you need to to get through it.

Hello johnsonbl. I'm still somewhat confused about dental care because I hear so a good deal of different information. My dentist says: do your thing, you'll do it well. Not helping much. On a website, I read something about using fluoride trays twice every day during rads, to which my dentist said it appeared a little exaggerated. I brush my teeth twice a day with the special fluoride toothpaste and I try to keep the foam in my mouth for a minute or two. I tried using the trays, but I find it rather hard to put the fluoride toothpaste evenly on them.

How did you manage your dental care?

wbcgaruss said:

Dental Care Suggestions Vary

I have read on here of some getting the fluoride trays and different recommendations on their use. Some were told to use during treatment and others to use afterward also. A lot of folks never mentioned them. I was never given any trays the docs just emphasized dental care. I think the real enemy of your teeth is the lack of saliva many of us have.

From Mayo Clinic-Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

So I think the best we can do is sip water or sugar-free liquid to keep your mouth moisturized. Chew gum that is high in Xylitol, floss your teeth once a day, brush your teeth at least twice a day with fluoride toothpaste. And see your dentist at least every 6 months and while thereafter the cleaning they can apply a fluoride varnish to add protection to your teeth. Also, the dentist has prescribed a prescription-strength fluoride toothpaste that I use every night before bedtime that I brush on and do not rinse out just leave it be after brushing it on. Also, there are Xylimelts to use at night or whenever you need them to help with dry mouth.

found this info from the ADA also (American Dental Association)

General Palliative/Preventive Interventions
Management of xerostomia and hyposalivation should emphasize patient education and lifestyle modifications.^{1, 2} Various palliative and preventive measures, including pharmacologic treatment with salivary stimulants, topical fluoride, saliva substitutes, and use of sugar-free gum/mints may alleviate some symptoms of dry mouth and may improve a patient’s quality of life.^{1, 2, 5}

Patients should be counseled on lifestyle tips for relieving dry mouth; these include:^{9, 12}

• sipping water or sugarless, caffeine-free drinks
• sucking on ice chips
• using lip lubricants frequently (e.g., every 2 hours)
• chewing sugar-free gum or sucking on sugar-free candy⁹
• avoiding salty or spicy food or dry, hard-to-chew foods⁹
• avoiding sticky, sugary foods
• avoiding irritants such as alcohol (including alcohol-containing mouth rinses5), tobacco, and caffeine
• drinking fluids while eating carefully^{6, 9}
• using a humidifier at night⁹

Dental and oral health-specific recommendations from the National Institute for Dental and Craniofacial Research³ and others^{5, 9, 13} include the following for patients with dry mouth:

• brush teeth gently at least twice a day with fluoridated toothpaste
• floss teeth every day
• schedule dental visits at least twice a year (with yearly bitewing radiographs)
• use of a prescription-strength fluoride gel (0.4% stannous fluoride, 1.0% sodium fluoride) daily to help prevent dental decay
• prompt treatment of oral fungal or bacterial infections
• application of 0.5% fluoride varnish to teeth
• dental soft- and hard-tissue relines of poorly fitting prostheses and use of denture adhesives

 

 

 

Thanks for your detailed input, wbcgaruss. In that case, I suppose, I'll be okay. One of my main issues were the trays. I have an extra-strong gag reflex and the trismus issue have become quite severe during the radiation treatment. I had trismus before, after surgery, probably due to my left jaw muscle that had been slightly affected by the tumour, but it had improved dramatically. Then radiation treatment started an trismus got worse again, until now, where I can open my mouth about an inch or so.

My saliva is quite okay, at the moment. Interestingly, it even seems as though it has got slightly better, as I didn't wake up with a dry mouth for two nights in a row, now. Morning dryness had been my only issue in that regard and it seems to have improved. Still 7 sessions to go, though and I'm weak, thin and exhausted. But I suppose it's quite normal. I'm happy not to have any fungus or mouth sores. Hope it stays that way. Taste issues are bad but that's where we all go through.

wbcgaruss said:

One More Thing

But first I appreciate the thanks, no problem I guess that's why I keep hanging around her and others also this is difficult and we try to help, give back, whatever you want to call it to help others have an easier time if possible. You say you are I'm weak, thin and exhausted. I can relate to that. My first cancer was throat cancer and reading what is going on with you makes me remember things. I too was weak and exhausted but probably not thin as I had a feeding tube. This treatment is hard on the body but you will make it. After it was all over and I recovered a bit I remember thinking that this was the most difficult thing I had ever gone through in my life. And one question are you having any difficulty with thick stringy mucous in your mouth from the radiation? I had it and it would make me choke and gag at night and wake me up. Take Care-God Bless-Russ

No, my mucous is only a bit thicker than usual. Not stringy at all. Hopefully, it will stay that way until the last session. I think I'm rather lucky in terms of side effects, at this point. A bit of dry mouth when I wake up, but neither this morning nor yesterday, though that had lingered on through the week before. Of course, swelling and occasionally gagging, but only on Friday — got better through the weekend.

Radiation doctor told me that some saliva glands should be less affected than others and could keep working through the treatment.

I also have itchy skin on my neck, but no rash or burn, really.

My husband, as you know had TORS with bilateral neck dissection in March for BOT primary and two positive lymph nodes. He then started Chemo and Radiation in April. His radiation dosing was 30 doses ~ 60 GY to the tumor site/ BOT/ left neck region; and 54 GY to the lower left neck region. The bilateral neck dissection allowed the doctors to know that he could do well with only unilateral radiation to the affected side ( no positive nodes or tumors to the other side). During treatment, he was always able to swallow. He didn’t have terrible pain with swallowing from radiation  ( however, TORS was a different story ~ very very painful for two weeks) . What bothered him most with radiation was the lack of taste, texture, and dryness of mouth that set in about two weeks into radiation. It was very challenging, so he had lots of high calorie high protein smoothies to get him through. Now 6 months out, taste has probably recovered about 95%, and saliva recovered about 75%. Things just progressively got better each week. You can do this, and will be on the other side soon. One hour at a time if you need to!