So I'm thrilled to have finished last Friday (30 rads and 2 cisplatin). Sorry to have gone off grid; it was all I could do to just function. I did I wo a PEG and still don't regret that, but it did make it all the more challenging. One question: like most, I'm 4 days out and think I'm finally stabilizing, but certainly peaked with symptoms after Rads ended. I'm dealing with severe mucositis but I have that handled a meds. What I'm more bothered by is this mucus and ropey saliva! It's so disgusting. Can someone please tell me how long this lasts and reassure me it goes away? And you guys were not kidding - this treatment is no joke and there were some dark days that drove me to my knees. But it has made me stronger and was worth every bad day if the cancer stays away. I appreciate all of the suggestions from this board and utilized many of them! So beyond helpful as I honestly think our docs mean well, but u cannot fully understand the pain of this wo having gone through it.
Hope everyone is doing well!

Laurie

Congrats on finishing your treatments!!!!

I hope Im wrong, but its a little early to be feeling better. The radiation is still working so dont be surprised if you have a few rough weeks.

The thick ropey mucous is temporary, it will hang around for a couple weeks. Usually between 3-6 weeks post rads it will suddenly end and dry mouth will take its place. Sleep with a humidifier, use a waterpik on its lowest setting with a mixture of warm water and mild mouthwash. Rinse your mouth several times per day with a mixture containing 16 oz of warm water, 1 tsp baking soda and 1 tsp salt. If the salt burns, cut it back or omit it but try your best to have some salt in there as it will help with healing. When you see your doctors, ask the nurse to suction out the mucous. You can also get a portable suction machine to use at home with a prescription from your doc. Its available at a medical supply company.

Keep focusing on your intake. Every single day until you hit your one year mark post rads you need to watch your intake. This is what will help you get thru things easier. Every single day take in at the very least 2500 calories and 48-64 oz of water. Adding high protein whey powder also will help with your recovery, but ask your doc first.

Best wishes!!!

If you have walked out of that tunnel so soon I'm really happy for you as that's REALLY unusual so let's hope that's it.

Hey there... Christine answered your saliva questions so I am simply going to say.. congrats... feel better and better..

Congratulations, Laurie. That's amazing great news! Sorry about the ropey saliva. It's a drag I know, but as Christine has written, it will pass.

I'm really proud of you for coming through it so well. Things will be getting better and better from here.

Oh I'm not out of the tunnel at all; this has been my worst week. Mucositis and mucus are awful. Was just wanting the reassurance that mucus will go away. If so, I think I can deal with dry mouth. One thing I did (on my own - no MD advice), is I'm taking my course of decadronn that was to go w my chemo. In Peds we use a ton of deca for sore throats so I figured, why not give it a try for my throat? Was going to take it anyway if I got 3rd cisplat. Anyway, I think it's helping my swallowing immensely, which is key wo the PEG. Christine - my weight is down but in a very expected way, and im pretty convinced the tube wouldn't have helped much since I was mostly limited by volume/nausea, not mouth pain. We are all different, though of course. I go to the infusion center for fluids when my water intake drops due to focusing on Shake intake. Anyway, you guys were so right: every day is still different, a new twist on same theme. Looking forward to good days outnumbering bad! Thx for all the advice so far!

Laurie, you sound like you are doing really well, despite the mucositis. That will end. Congratulations!

Hi Laurie - congrats on treatment completion, and now part two of the journey begins.

My treatment phase was quite easy, very few side effects. I can't say the same about post treatment. I had all you're having, mucositis, ropey mucous, it was gross and quite uncomfortable in the beginning. And it stuck around for awhile, as in a month or two, but it does slowly get better. Improvement seemed to be at a turtle's pace, but it does improve.

Three suggestions for you. Get a humidifier and use it at night beside your bed. The moisture helps with the dry throat dry sinus problem. If you don't have that yet, you will soon enough. Mine felt like somebody coated the back of my throat with glue and it dried, actually made it difficult to swallow without a sip of water during the night.

Another is the sinus irrigator. Mine is the NeilMed squirt bottle type (not the Netty Pot). It took some getting used too, but it works wonders for keeping the sinuses clean and breathing easy. I'm on my second box of 50 salt packets I like it that much.

Lastly, chew Trident gum. The xylitol sweetener is great for dry mouth and for when you get that horrible metallic taste that seems to come and not want to leave.

Realize there are some things that make mucositis worse. Iced tea is one and milk is another. Iced tea was by far worse, it seemed to double the number of sores and pain quickly after ingestion. I only made that mistake once. Milk (particularly really cold milk) would seem so soothing when drinking it and then bring a nasty surprise later. Lastly, hot, spicy foods will aggravate it also.

I'm six months post treatment right now and still have to watch the hot spicy, but the mucositis is gone and I can drink both iced tea and milk. I can also taste most foods, though none taste as good as they did before treatment, particularly good ice cream.

take care
Tony

Laurie congratulations on completing the treatment. As you know I'm a month in front of you and most of the advice I would have has already been covered above. Keep up with the humidifier and the mouth washes. Keep the fluid and nutrition up. Keep the pain relief up, even after the symptoms peak. Keep exercising at least a little, walking helps the bowels which may be sluggish with the pain meds.

You are used to talking to a doctor or nurse every day during treatment and while you know its going to happen its easy to find yourself disconnected from medical care. You know its there for you, but its not in your face every day so you might not use it as readily.

The most important message to myself a month ago... be patient, it will take a lot longer than you think to get over this. And don't forget we're still here to talk to.

Hang in there, Laurie!

You mentioned nausea. Must say for me anywho the Zofran didn't do much. I was sick to my stomach 24/7 for 3 months after rads and the only thing that eventually helped was Compazine, which I understand is an older medication.