Friday, January 24, 2014

Mouth sores and other medical adventures

I never really had a problem with mouth sores. Until chemo that is. For those of you who are uninitiated, think canker sores.Ouch

During chemo, I was lucky enough to end up with mouth sores fairly frequently for the first few months, until my protocol changed to Taxol. My oncologist prescribed what is known as ''Magic Mouthwash" which his mixed by the pharmacist. Until that point, I never realized that the pharmacist at Walgreens or CVS would mix things to order in this day and age. I was under the mis-assumption that everything came out of a prepared bottle and was just resorted and relabeled.

But I digress. During chemo, I enjoyed Magic Mouthwash to solve my mouth sore issues. So why is she blogging today about life six and 1/2 years ago you ask? Because I am now on Methotrexate for my RA and it causes mouth sores. I have two on the tip of my tongue. Ouch.

So Wednesday afternoon I went to see my rheumatologist. She prescribed Magic Mouthwash for my then one mouth sore. I asked what is in it and found out they usually prescribe a combination which contains Benadryl, lidocaine (pain), Maalox (coating properties), and an anti-fungal. I said I am allergic to Benadryl. She had to find a combination without Benadryl.

She said she would have it, and another new prescription, called into the hospital pharmacy so she could communicate directly with the pharmacist. I had another test and then stood in line at the pharmacy to find out that my prescriptions had not even made it to the pharmacy yet, never mind be filled. They called the doctor's office and found out that the nurses had a question on her notes and had to wait until she was done with her next patient. I said fine, please have them sent to m y local pharmacy and I'll pick them up later.

Two hours later, I called the pharmacy and they did not have the prescription yet, only another one which I decided to pick up in the morning. But it was too late to call my rheumatologist back to find out about the missing 'magic'. And my mouth sore still hurt.

Yesterday morning I was back on the phone with the doctor's office. It was a computer glitch the prescription was in the system but the doctor hadn't signed off on it for some reason so it could be sent to the pharmacy. A second mouth sore started to emerge as well.

At 2pm I called the pharmacy to see if the magic was ready. No it wasn't. I called the doctor back and the secretary said it had been sent to the pharmacy but my insurance company wouldn't cover it because it contained Maalox which is available over the counter so it had been punted back over to my doctor for another revision and signature.

At 4pm I called the pharmacy again and found out they had just received the prescription and wanted an HOUR to fill it as they had to mix it. I went home and got comfy because my feet hurt and my tongue hurt, with its second mouth sore. They called 30 minutes later to say it was ready. Grr.

I got back in my outdoor clothes to go back to the pharmacy and picked it up. The second I walked in the door, I grabbed a spoon and swished it around my mouth. Relief finally!

After a lot of red tape, my tongue stopped hurting... That was just one day in my life as a patient. And my tongue still hurts when I eat anything.


Cameron VSJ said...

Hi Caroline! My wife also is a fellow cancer survivor (8 years!). I was checking out your blog just now and had a quick question. I was hoping that you could email me back when you have a moment. I really appreciate your response, thanks!

- Cameron

Caroline said...

Cameron you need to give me an email address. Not in your profile!

Jim's Girl said...

Hi Caroline. I wanted to let you know I often have the urge to comment on your posts, but I use Feedly to read my favourite blogs and much more often than not, I get punted out before my comment gets recorded.

I wanted to say this about your post on fibromyalgia pain, but I can't find that one now: Ow. Thanks for painting such a vivid picture of the pain you are experiencing, Caroline. (Glad I thought to copy that before I lost it).

As for Magic Mouthwash, I had a long delay in filling my prescription for it because there are several different formulations. The pharmacy needed to know which my doc wanted. By the time I got it the sores were gone! Darn bottle is still in the fridge unused. I suppose that is a good thing, in the end.

Kate, of Kate Has Cancer

Anonymous said...

Caroline - I know this might sound far out, but it worked for me. I had horrible mouth sores during chemo - I could hardly swallow. I tried drinking "Marshmallow Root tea". This is a ground up root you can get at a healthfood store that has bulk herbs or online. Its cold water infused- so you just put some in a jar with water and leave it in the fridge overnight. It is supposed to heal mucus membranes. I drank it all through treatment, not just the weeks I was on chemo - I drank about a quart a day. My sores resolved and I never got them back, even though I had five more cycles. I would recommend it to anyone as its easy to do and it seems to work.

Season Reza said...

To continue with your football metaphors, you were in the red zone and in your fourth down, and seconds left on the clock. The quarterback (pharmacy) finally got it right and your team won. Finding the right ingredients for your mouthwash to make sure there are no allergies, and that the insurance will be able to cover it, is no easy feat. Those are important so that our physical and financial wellness aren't compromised.
Season Reza @

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