Hello everyone. I hope you all enjoyed the holidays. I did, and then yesterday, I had my first radiation treatment. My tongue felt a little sore afterwards, which I noticed as I ate dinner. I then woke up in pain in the middle of the night. This morning I rinsed my mouth out and spit out dried blood. I took a flashlight to my mouth and saw that the roof of my mouth had dried blood all over it. Yuck! Am I imagining that my mucous is already thickening after one treatment?

All I can say is wow, I knew it was going to get bad, but already after one treatment? I know it's going to get worse, I just thought I had a couple of weeks before it got there.

What pain killers have helped you? I currently have in my arsenal Codeine, Percocet and Vicodin. I took an Ativan yesterday which really helped me to relax during the radiation. I also have Zofran and Compazine for chemo, which I start tomorrow.

I don't have the Rxs for the saline oral rinse, nor my special toothpaste/mouthwash. I have to pick up the fluoride tray ASAP.

I had my feeding tube placed on Friday, along with the chemo port. I've been in pain from that.

Also, foods. I've been trying to enjoy that which I know I may not be able to eat again. I've also been good about getting enough fruits and veggies. I have a feeling that before long all I will want is a smoothie or Ensure. Any tips? I'll search through the forum for advice.

Thanks everyone and be well!

Hi Katie!
Well done on getting through your first treatment, the first is always the worst because you don't know what to expect. I'm only new to this forum but so far found it very helpful. I am 3.5 months post radio therapy so have come out the other end not to scathed! I found pain relief that worked for me was in the beginning taking panadol around the clock, so as soon as the six hours were up between doses id take the next dose, just be careful not to take more than stated as its extremely toxic to your liver. Then as the pain increased I took ordine (morphine) oral liquid for fast acting pain relief on top of the panadol. I read somewhere that panadol helps the morphine work better as it travels to the right receptors or something like that. Also I was taking for my constant background pain a morphine sachet which was liquid as well. This seemed to get me through until after the end and then slowly when I started to feel better I weaned myself off them gradually, now I'm not even taking panadol. Best of luck with your treatment. X

Happy Holidays!

Tell your RO about the blood, which could be from anything like dried blood from your surgery or irritation from any sharp texured foods you ate, if any. Some feel the effects of radiation right away, some take a few days, and most after the 1st or 2nd week, so keep that in mind in the future as you proceed to try and eat softer, less acidic, and non spicy foods as not to irritate the mouth. You can use a salt water/baking soda mixture to rinse your mouth throughout the day. If the salt burns, cut it out. I also rinsed with aloe vera juice too, distilled type, which has healng properties, and glutamine powder, which repairs tissue, and when the mucus got thick, I rinsed with selzer water, papaya or pineapple juice. You have an arsenal of meds. The others to get may be magic mouthwash or similar, Fetynol patch if pain persists and find the others are not working well, and is at the ladder as far as pain relief goes, and Mucinex, Robotusim, for mucus.

I used biotene toothpaste for dry mouth, biotene mouthwash, and biotene drymouth gel at night, but any plain non flavored fluoride tooth paste is good, using a soft brush, along with no alcohol mouth wash, which dries the mucus membrane, and flossing, all after each meal, and before bed. You might want to use a humidifier at night to keep the mucus membrane from drying out, sleep on an incline to prevent mucus build/up and acid reflux, and drinking water before going to bed to keep the mouth moist, and kept handy for drinking bedside. As you can see, oral care is very important. And helps prevent Mucocitis, which most get, or reduce severity, and to watch out for secondary bacterial, fungal, and viral infections from mucostis, which are treated with different medications. Chemoradiation treatment will compound these toxicities, than either alone, and is like adding 2Gy to the radiation.

As far as smoothies, I just used canned Glucerna via the tube, after the 2nd week being I was just too tired to make anything, plus milk, sugar burned my mouth, and even have a juicer, and vitamix, but there are plenty recipes for smoothies, protein shakes, soups, pur�ed vegetables, etc. Whatever you do, keep doing the swallow exercises as instructed, and try to eat by mouth as long as possible, and ensuring to get adequate nutrition, protein, hydration, and rest.

Hi Katie,

Merry Christmas and I hope that the treatment didn't take too much out of the festive season and you were able to enjoy time with loved ones.

For pain relief - my wife took paracetamol to start off with and then moved on to Endone - Oxynom - MS Contin (20mg - 30mg) as the pain got progressively worse towards the end of treatment.

You might also want to ask for lignocaine & cocaine mouthwash as well for temporary relief before and/or after eating.

Please note it is very important to stay ahead of the pain whilst not trying to over take the medication. Every morning & evening, rate your pain between 1-10 and try and keep it below 4.

As with any opiate based drug (morphine, oxycodone etc.), there is a high level of dependency that forms with it, and I have seen too many patients just go nuts on it and have an incredibly difficult time getting off the medication and suffering it's side affects.

Furthermore, your body's tolerance levels for these drugs form very rapidly meaning you will have to continually increase your dosage for it to be of any use. Hence - the later you start, the better effectiveness it will have when the pain gets REALLY unbearable.

As for eating, make sure you eat EVERYTHING & ANYTHING during the first few weeks of treatment as you will become increasingly dependent on the Nasal Gastric Tube over the next few weeks.

Stock up heavily on Ensure 2.0 and make sure you get yourself a blender (preferably one of those magic bullets) so you can mix it up with more stuff as well. For my wife, I used to give her 3 of these per day and it would top over 2100 calories:

1 x Ensure 2.0 (450 kcal)
1 Tbsp x Manuka Honey (Active 30+)
1 Tbsp x Sustagen Powder
1 Tbsp x Peanut Butter
100 ml x Full Cream milk
1 Serving x Blueberries
1 x Banana

Hope that helps and let me know if you need any further info.

Hi, Katie!
Glad to hear you got through your first treatment, and it really was a shock to me, also, to discover that my discomfort started with the very first treatment. I also-later in the process-did the flashlight inspection-thing and DROPPED the flashlight when I discovered that ALL of the back of my mouth/throat were burnt BLACK. Ew! (Was nothing compared to the discomfort!)
Careful with over-doing those narcotics, you can tell when you're crossing into "just 'coz I wanna" land. ;-)
But hang in there, kiddo, you're really a LOT tougher than you think you are, and radiation gave me 5 problem-free years! You're doing great! It ain't easy, but nothing worthwhile ever is!
These people on this board are WONDERFUL and don't ever hesitate to ask about ANYthing you're having trouble with or anxious about.
Much love and support from the-supposedly sunny-south! Glad you also had a wonderful Christmas!
Gordon

Katie, good that you're writing at this stage and everyone has given you good advice.

Jay is referring to lidocaine, which is available in viscous (liquid) form. It's like a gel, and you swish it around in your mouth for a temporary numbing effect. I found it was the only thing that worked for me so I could get the liquid nutrition down. But then I didn't have a PEG. But from everything I read, as well as common sense, I urge you not to rely completely on the tube for all swallowing. At least keep drinking water by mouth so you keep your esophogeal muscles in shape.

For pain I used oxycodone but mainly just at night. As someone mentioned, Fentanyl is kind of the last line of defense, at least that I know about. It comes in patches that you replace every few days. I used it for the last week or 10 days of rads and it helped.

Keep us posted and hang in there. You'll get through it and on to recuperation before you know it!

If you are getting chemo as well, check with your MO about taking Tylenol for pain. Tylenol suppresses fever and if you get an infection after the chemo, you might not know it since one of the main symptoms will be masked.

Sorry that you have to take this journey, but do know that everyone here will support you.

Hey there first treatment pain etc... May be related to the fact you're still helping post op. definitely tell your RO. Hugs and strength for the coming weeks!