garlandkat's Cancer Blog
October 27, 2009
Do any of you feel that way?
I guess I shouldn’t whine, I haven’t had too many appointments here lately – but I did have to go today before my primary doc would give me a refill of my pain meds.
I had been doing well until last week. I started a new job which is regular human hours – 8 to 5. I get up at 5:15 am; leave the house around 6:50 – drop the teenager at school and I go to work. Clock in by 8 – hour for lunch, normally done by 5 – and home between 6 and 6:30 depending on traffic. These are longs days for me compared to what I’ve been used to. As a result I’m not “resting” during the day. . . so the saliva glands are acting up again, very swollen and very painful. My only relief is at night when I take one pain pill and 1 or 2 benedryls to keep from itching due to the codeine.
The doc said today that he could actually feel the glands, which he says normally he cannot find. I explained to him the new working situation. . . and I know I cannot cut the hours back because I’m the only one that does my job – besides the boss, and he sure doesn’t want to do it!
Anyway, I just needed to whine it out. . . my husband is happy (and so am I) that I have a normal office job; free from the hazardous chemicals that I’ve been exposed to for over 25 years. It is nice to be able to wear “normal” clothes everyday and not worry about getting stained.
It’s just going to take time to get the body used to all the hours.
Evoxac update: This medication can CAUSE swelling of the saliva glands while aiding in the production of the saliva. It can also cause headaches. . . for these two reasons I weaned myself off of it. I constantly drink water and use Oasis mouthwash at night.
Has anyone else here had similar swelling and pain of the saliva glands after an RAI treatment? Just curious!
Another Day, Another Doctor's Appointment!, 
4 comments)
Hey, if we can’t whine and snivel here….then where? It’s all good so bring it on.
The days can be very long sometimes. Just be easy on yourself as much as possible. I’m glad the job is working out though.
I am just now at the end of the isolation period (7 days) after the RAI. I sucked candies and drank so much water I thought I would burst, but my glands got pretty sore and swollen about the 3rd day. They’re better now but still tender.
When does the nasty taste go away? And I still can’t taste things like I did before. BLECH.
Tomorrow is the body scan and I am out of isolation. Yeah!
Posted on Hi Mary,
I sucked fresh lemons for 4 days, candies for almost 2 months. I too had a loss of taste – which came back really slow. The real pain in my saliva glands didn’t start until 7 weeks after treatment. I’ve read that some patients get it months after. It’s one of the unknowns. When I called the nuclear doc his response, “My RAI couldn’t be the cause, something else is wrong with you.” This doesn’t happen to everyone, and when it does there is no prediction of how long it will last.
As far as the nasty taste – I used baking soda to brush my teeth and as a mouthwash. It cut through the crud in the mouth and leaving a clean taste, where I couldn’t tolerate regular toothpaste with mint flavors. That made the taste worse. I’ve been a Crest user my whole life but have switch to Arm&Hammer w/baking soda. I still do not drink any soda as the can taste is still too intense, plus no soda has helped with the 20 pound weight loss since all of this started. I would keep with bland foods and just sample with others until they tasted ok. One of my biggest disappointments was after I was released from the LID I wanted ice cream. . . I went and got a hot fudge brownie sundae – and couldn’t taste any of it. I’m 4 months post RAI and the taste buds are pretty normal.
Prayer coming your way that your scan is clear and that you are on the downhill slide. Whew, what a ride!
-Kathy
My doc is still trying to find the right dosage of Synthoid, I’m still
Posted on Kathy, I don’t know much about your cancer but am always here to listen. Can you drink aloe vera juice? It is suppose to help internal healing. I tried it with radiation therapy to the pelvis, and it just ended up as a mess. I’m sure you can understand. I now take aloe vera caplets.
Returning to work is a difficulty at first. After therapy I returned to work. After making dinner, and soaking in a bubble bath I was exhaused. Try to make dinners ahead and freeze them, or use left overs. What ever is fast and easy. If you have someone to help, now is the time for them to step up to the plate. Rest as much as possible. Actually going back to work helped keep my busy mind off of other things.
You have been through more than your fair share. Take it easy on yourself, and things will get easier as you regain your strenght.
I will have to read you bio. to find out more about your cancer.
Day by day. They will turn into years! Amy
Interesting about baking soda… I will buy lots and lots of baking soda’s boxes before surgery…
Posted on July 30, 2009
It’s been five weeks since my last post, I’m finally endo is going to decrease my dosage a bit. This makes me a little sad because for the first time in four years I’ve been able to lose weight over the past two months. My itchy dry skin is gone, and I finally have the ability to grow fingernails. My hair is a lot grayer and is still falling out, but hopefully the falling out part will stop soon.
I have to blog about a side effect from the RAI treatment. The information available to patients is so sparse and sporadic that I think any experience that a person can post may benefit the next – or at least let them know what “could” happen and how to deal with it.
One of the items that every patient is told when they have this treatment is to suck sour candy – or fresh lemon wedges. You must do this numerous times a day, it’s to keep the saliva glands from swelling and scaring from the radiation. The sour makes you salivate, thus keeping the glands from swelling. But, no where (that I found) does it say for how long to do this. I sucked lemon wedges for five days. . . the doc that gave me my treatment told me this was better than the candy, and that I would get sick of the candy. Well, I got sick of the lemon wedges, and went to the candy, and fresh fruit (lime and lemon) popsicles. I ate candy at least every two-three hours everyday. My treatment was on June 5th – on July 5th I was eating lunch, bit down on a piece of chicken and had excruciating pain on the right side of my mouth, just above my back teeth, in front of my jaw. During the afternoon the pain got worse, like when you have really bad sinus pain that makes your teeth feel full and hurt. I took Tylenol & Ibuprophen, neither really helped. Finally Tuesday I called the RAI doc, explained to the tech my problem, she said that he said, “There is no way that MY (meaning his) treatment could cause pain this far out. There must be something else wrong.” So I called the endo. . . after three days of runaround, I called my PCP - got an appointment for July 13th. He determined that, “Yes” – my saliva glands are either swollen or scarred and he put me on medication to help the saliva flow. I’m to take it for a month, then stop and see if the problem of no saliva, pain and bad taste in my mouth reappears.
So, the things I learned from this are: 1) When you intake sour tasting items, the saliva will flow, but it doesn’t mean that the glands are not swelling. By the way, I still suck on sour candy numerous times during the day. 2) IF you get a nasty taste in your mouth – stop using over-the-counter toothpaste and mouthwash. This can make the taste and swelling worse. Plain baking soda works wonders. It’s really nasty at first, but the bad taste does not come back during the day. This information is on the ThyCa website – under RAI treatment information. 3) Be sure to ASK your PCP and endo which of them would need to see you for any side effect from the RAI treatment. The doc that gives it to you is a freakin’ nuclear scientist and from what I’ve seen does not have much of a bedside manner to care how you are after the treatment! Sorry if that is harsh, but it’s a fact.
My home stretch is that I have three months before I see the endo again. If the pain and swelling are gone after stopping the saliva med in another week or so, I won’t see the PCP until September.
I guess this is enough rambling for one evening. Best wishes and happy trails to everyone.
Headed Down The Home Stretch (I Hope!), 5 comments)
Great information. Thanks for posting this I am sure it will help someone in the future going through this.
Posted on Good to know, this is in my future, and I sure haven’t spotted the info you talked about in what I’ve read so far. Admittedly though, I’m still reviewing the surgical end of things more.
when I went to the recent THYCA conference in my area a dentist spoke and it was fascinating. He shared one study which showed that after an ablation dose the levels of radiation in your saliva glands reach the point that they can cause damage after 15 minutes from the last flush. So idealy we should space out those lemons to every 15 minutes (I will def use this if I have to in the future)...
I wonder how your meds are working – my symptoms showed up way later too…
Posted on Thanks for the additional information. I am just finishing my week of isolation, but will keep it in mind for next time.
Thanks for your support - 
