Hi, all.

This is a new battle road for me, so I apologize if these are old questions the have been previously addressed. I looked in the FAQs and search engine, but couldn't easily find anything.

As far as the magic mouthwash goes, can I use that before I take my meds (especially in the morning) because it feels like I am swallowing razor blades. My concern is that the numbing effect may cause me to choke or aspirate. Any thoughts?

My second question is that I am to have a PET/CT on Monday. Is the machine similar to the tube of an MRI? If that is the case, I will need to be sedated first, so I wanted to be prepared ahead of time. They said that the test takes about 40-45 minutes.

They said that I need this test to make sure that nothing is active in my lungs (among other places). Is this what they tell everyone...about the lungs? I am terrified. Is it usual that the doctors just have to hope for the best and prepare for the worst kind of thing? They seemed hopefully optimistic. Also, my surgeon said that when he found the tumour, it was about 1.5 cm.

I know this is all kind of frantic and scattered. I went in there with my cancer notebook, full of questions. Now these are just more questions that are coming up after the fact. I know I will have more time to ask questions, but I thought that some of you could weigh in for me according to your personal experiences.

Thanks,
Kerri

I always close my eyes when taking the MRI, CT or PET. I do think its a tube, but not as small as the MRI.

Excellent question about MM! I have read from Gary about being cautious not to swallow magic mouthwash while others have said its perfectly ok to do. When I went thru it the first time I would do the MM and then take my pain meds. It made them easier to swallow. Ive seen several others do it as well. With your recent surgery, I cant imagine how it would feel attempting to swallow anything. Many meds can be bought in liquid form which makes them much easier to take. If necessary ask your docs for prescriptions to get them in liquid form. They are more expensive like that but insurance will cover them.

A tumor of 1.5 mm is tiny! Hopefully that means your cancer was found early at Stage I. Oral cancer commonly will jump over into the lungs. Many of us have had 'spots' on our scans for years which go unchanged so if something shows, dont panic. Ive had a 2mm 'spot' for the past 3 or 4 years and Ive quit worrying about it.

Try to rest and keep your mind occupied so you dont go to the "what if's" of worrying. Take it step by step, day by day and dont get ahead of yourself. I have been down this path twice and know how hard it is. Try reading something interesting which keeps you focused.

Good luck with yorur recovery!

Hi there. I know its hard... You'll get through it - just stay strong -Magic mouth wash is great it numbs the pain but you can still feel to swallow - every hospital makes it different, the one I had you could swallow. It was great as I would swallow it then chug an ensure (at the end of treatment when things were bad) it doesn't last super long but it lasts long enough.

CT machines are like a doughnut so you aren't fully covered - maybe older ones are different - I've never had a PET. But take a sedative anyway the lack of stress won't hurt, but I think you'll be okay.

I was afraid after I was diagnosed (particularly after reading about lung mets etc...) my dr. Immediately sent me for a head and chest ct. I think it's protocol. At the time my tumor was in situ with perineural involment but hadn't spread - however after my biopsy it took less than a month to move into a node. Thankfully all others were clear only one had cancer - with ECE - post surgery they again sent me for a head and chest ct again. Since I've had 2 clear scans of my head I requested a chest ct just a few days ago.

The tumor was small - so far you've had wonky nodes (possibly your body's way of telling you something was going on) so the likely just want to make sure.

After my radiation dr sent me into a panic over my second chest ct. (it was the same as my first I found out later - clear) I looked into lung mets - generally speaking (I asked 2 oncologists this at the time) it takes more involvement than just a tumor and a node for it to move into the lungs, and for some people despite the progression of the disease - it never does.

I totally understand what you're going through - the fear and anxiety etc... I'm not sure if you're a member of h & n survivors on face book. But there's a woman there who's had three recurrences, three rounds of radiation, and is cancer free. Hugs you can do this.

Hello Kerri

I handle the PET/CT without difficulty because they made me more confortable with my leg positioning, it is less confining than MRI's and does not last as long. The MRI was difficult for me. It was extremely difficult for me to remain perfectly still for 45 min and I caused the scan to have somew bluring in spots where they did not start over. I did not know about taking a sedative but if I ever have another I will take something.

Thank you for all of your support and input. I'm trying to keep my pain under control and right now, that involves lots of sleeping. I tried taking my last round of meds with the MM and it helped a bit. Christine, even the liquid Roxicet sticks to the raw mucosa at the back of my throat. I tried to gargle with it as far back in my throat as possible, but the directions say to spit it out. I do end up swallowing a bit of it, though.

Kerry, one thing I did was to get my meds in pill/tablet form rather than capsules which were time release. Then hubby would crush them and put them into Jello pudding....it was always easier for me to swallow the pudding with the crushed meds than to swallow the meds with water, or to drink the liquid meds because they stung so bad. You might give that a try...all my meds could be converted, we just had to ask for the scripts to be rewritten.
WISHING YOU THE BEST.

Kerri

Before OC and it�s treatments I was claustrophobic. I was petrified in confined spaces and fainted at the sight of needles. I understand the stress and anxiety you're feeling. I�ve lost count how many MRI�s and scans I've had over the past 5 � years. MRIs have noisy banging sounds in the narrow tunnel.

Staff made sure music was playing for patients undergoing radiotherapy at my Cancer Centre. I would do my best to concentrate on the music and try to zone out. I surprised myself how well I managed. Taking anxiety medication before scans etc is a great idea. (as long as your doctors approve)

I can�t swallow tablets or capsules, so medications/antibiotics are prescribed in liquid form.

Best wishes during this difficult time.

Karen

Hi Kerri,

Magic mouthwash is a compound prescription that usually consists of 3 different medications � the medications can vary so some may be a �swish & spit� and others may be �swish & swallow�. So you would need to verify with your doctor what yours is and when you can take it. The one I had required refrigeration and had a short shelf life. I hope the one you have helps with the pain.

I�ve had a PET/CT scan a few times, and every time I�m a nervous wreck before the scan (and until I get the results). I believe you just had surgery so don�t be too alarmed if the scan shows some �hot� spots in the area where you had surgery. Typically they recommend waiting 3 months after surgery to have the scan (which is not an option in your case) and 3 months between scans to minimize the �false positives�. When that happened to me my doctor sent me for a FNA (fine needle aspiration/biopsy) of the reactive �hot� nodes which were then negative for cancer. (Caution � a FNA takes a sample of the cells in the nodes, so there is the possibility that there are cancerous cells present, but were missed during the sampling.)

The PET scan measures sugar uptake in cells � cancerous cells take up more sugar and will show as a �hot� spot on the PET scan. About 30-45 minutes before the scan begins you will be given an IV so take a book with you or you can even take a nap. They should have given you some prep instructions to follow regarding your diet � what to eat and not eat � basically avoid sugar. Here are some instructions that I put together from a few different sources (including the OCF forum):

How to Prepare for your PET Exam

DAY BEFORE YOUR EXAM

1. Patient should eat a low carbohydrate diet.
2. Patient is not to engage in strenuous activity or exercise. If job is not too labor extensive, the patient may go.

DAY OF TEST

1. No food 6 hours prior to test.
2. No caffeine or nicotine products 5 hours prior to test.
3. No diuretics the day of the test (water pills, Lasix). Take all other medications as normal.
4. No gum chewing, no hard candy, and no breath mints the day of the test.
5. Drink 16-24 oz. of water prior to test.
6. Drink plenty of fluid after the test to flush out the system.
7. Wear comfortable clothing. Room temperature is approximately 72 degrees.
8. PET/CT sites � NO METAL ON CLOTHING
9. Test takes 45-90 minutes. Total time is 2 hours.

***** From another source *****

24 hours prior to your appointment:

Refrain from consuming any caffeine, including any decaffeinated products for 24 hours prior to your exam. Note: Decaffeinated products still contain small amounts of caffeine.

12 hours prior to your appointment:

� Stay on a low-carbohydrate diet. (See guide on what to eat.)
� Do NOT engage in any strenuous exercise.
� Do NOT chew gum.
� Avoid mints.

6 hours prior to your appointment:

� Do NOT eat anything.
� Drink several glasses of water (2-6).
� Take any prescribed medications as usual.
� If you need to eat, please stick to a small protein-only meal.

Low-Carbohydrate Diet Guide

Foods allowed: Protein
� All meats
� Hard cheeses
� Unsweetened peanut butter
� Tofu
� Eggs
� Oil, margarine, butter
� Non-starchy vegetables, such as broccoli and spinach

Foods NOT Allowed: Carbohydrates
� Cereal
� Pasta
� Dry beans
� Fruit and fruit juices
� Sugar and candy
� Starchy vegetables, such as peas, corn and potatoes
� Alcohol
� Bread
� Rice
� Gravy
� Jams and jellies
� Honey
� Milk (including non-dairy milk)
� Coffee or tea

I wish you the best! You can count on your OCF friends to help you through this once again.

Hi, Kerri,

Anxiety is very treatable. The med that Clark found helped him with the simulation and radiation visits was Ativan. It took about 40 minutes to kick in but what a difference it made for him. Just before we left the house, he took 2 (1 was not enough for him) and by the time we got to the hospital, they had kicked in. Easy peasy! Also, he was able to enjoy a long nap after we arrived home.

Arm yourself with whatever works for you. Your healthcare team will support you, but you have to ask. You can get through this!

My best to you�
Anita

Hi, Anita.

My doctor also recommended Ativan. Once I know when the simulation is, I will request it. I normally take a low dose of clonazepam, three times a day, just to keep me level. When I go in for any procedures, like endoscopy (for example), it usually takes twice the normal dose to put me out. My mother is the same way. I guess I'm hard to sedate...haha!

Thanks for the advice. I'm glad it works.