Hi,

I will be getting one more chemo on 7/22 (if WBCs hold up) and 8 more rad sessions. Can't wait to put all of this behind me. I did have a few questions for what to expect in the last few days and the weeks that follow treatment. I welcome any general comments, but here are some of my side reactions that I can't wait to put behind me:

* Nausea/vomit due to either chemo or gagging. I take Zofran like vitamin pills twice a day everyday, and this has me constipated.

* Blisters on tongue -- I have a couple of large blisters. The Manuka Honey started to sting big time so I discontinued it. Any idea or workarounds for the honey and an estimate (I know everyone could be different) of when the blisters begin to vanish;

* As a side note, one of the blisters is on the left lateral side of my tongue making it very difficult to brush the inside of the left teeth. I have tried the smallest available toothbrush to no avail, and am now wondering if there is any tooth cleaning powder that I can apply on my finger to get those teeth?

* Mucositis - boy I hate that gooey feeling in the mouth. How long does that mucositis stuff last? Any ideas to deal with it.

* Dry mouth - I heard that this is something that only time can tell whether the saliva function will come back. I have read about an acupuncturist on the East coast who claims he has found a solution for dry mouth and wants $750 for two sessions. Seems like a scam, but am wondering if anyone has any experience in this area.

Thanks in advance for any comments.

Best Regards,
Chetan

Keep in mind that we can all be different but I would say that the overwhelming majority of us suffer the same. These are my personal memories:

Nausea..That was the worst side effect for me. Nothing helped. I even stooped all pain meds hoping that would help. I developed a gag reflex that lasted 3 weeks post Tx which made swallowing anything challenging.

Tongue blisters..depends on the focus of the rads. Mine was BOT and nodes on both sides so I really didn't have that problem.

Mucositis..Lasted for about 3 weeks for me. Finally went away and gave way to your next topic.

Dry Mouth..Started after the thick stuff left. Recovered, along with my taste over 2 years with noticeable improvements at 4, 5, 14 (the biggest by far) and 24 months post Tx.

Also keep in mind that most of us suffer the worse the few weeks AFTER Tx stops. I only say this to prepare you in case you do to.

Chetan,
Ok, here we go:
nausea: no problems with that They gave me Zofran IV after steroids, and my body did not like that. I know why it was done, but gosh, motility from the steroids and then "zap" everything stopped. I got so I took senokot-s 3 of 'em before chemo started. Sorta helped. Talk about a sensitive system, I guess that's me.

tongue blisters: no blisters but some sores (mucositis). I only used baking soda. I'd keep it in my mouth until they were less sore. I was probably only able to do that because I did have quite a bit of saliva through most of radiation. At the end of treatment I essentially lost saliva, my mouth was at best, "moist". I am 4 months out and am regaining it somewhat, so that I can eat most anything I want. Interestingly I was on the MD Anderson website yesterday & noticed that they had been awarded money to try out accupuncture on patients on head & neck patients while they are in treatment. Not everyone gets it, however. The oncology dentist told me that she had seen success with accupuncture. I don't know how much. If I thought it was more than I am going to get anyway, I'd look into it for certain. But since I had saliva until the last few days, have more now, and know that my parotids were spared, I feel fairly hopeful that I'm going to get it back.

mucositis: covered above, but special note--just recently I had the start of "hairy tongue" result of overgrowth of bacteria, and started cleaning my tongue more carefully--gosh I thought I did a good job. Anyway, I irritated one of the sores that I thought was gone on top of the tongue; not horrible, but . . . So using baking soda again, and it makes it better--it changes the Ph. The point is you can get some of those sores back again during the early weeks/months. My doc said it happens and does not mean you are regressing.

thick stuff: never had it in my mouth I had it at the back of my nose, going down my throat, sitting on my larynx, but it is getting better, or at least I don't always have it.

dry mouth: covered it under tongue blisters

Hey, you are approaching the end. It will happen! I totally agree with David on the weeks following treatment, especially for me the first 10 days. That's when I needed Carnation! Very sore mouth, etc.
That's when my neck was at its worst. If you live by yourself, have someone check in with you during that time. BUT, you'll be done, and it will improve, so keep that in mind.

Best,
Anne

Chetan - hang in there, you're nearly home!

1. nausea - zofran did nothing for me either and like you I was taking it daily for months. Also tried a few other remedies. The only thing that finally worked for me was Compazine. You might ask about it.

2. tongue blisters - oh yeah. A big time issue for me, ditto everywhere else in my mouth and throat. I used viscous lidocaine to try and dull the pain while I drank my Ensure clones every day. It was only partially successful. But give it a shot if you haven't. Maybe others will have other suggestions.

3. mucositis - I pretty much echo what my fellow David had to say about this. I'm not sure there's a whole lot you can do but spit as much as possible and hang in there. Most of us end up carrying a cup around. I kept those little kidney-shaped emesis basins from the hospital in strategic locations around my apt.

4. dry mouth - yes, another lovely side effect most of us deal with. Like David, mine was very severe at first but gradually lessened. I'm a little over 2 years out of rads and I'd say I've got maybe 75% of my pre-TX moisture back. The best I can say for this is that we're all different and to think about carrying a water bottle around. There are products that will help - Biotene makes a mouth gel (you're probably using their toothpaste and maybe also mouthwash... or you should be if you're not). There's also a product I picked up called Rain Spry spray with xylitol. It's ok, not great. You can check it out at www.xclear.com (no, I have no financial interest in the company!)

I can't comment on the acupuncture. Seems like a high price to me. If you're interested in pursuing that kind of treatment I'd get a referral from a Comprehensive Cancer Center. But as far as I know - think I read this somewhere here at OCF - there are no definitive studies that prove acupuncture is actually effective at returning salivary function for people like us.

Keep asking questions! And be well.

Almost finished!!!! Hang in there.


Rinse your mouth a few times daily with a mixture of 16 oz warm water, 2 tsp baking soda and 2 tsp salt. If it burns decrease or omit the salt, but do try to use some salt in the mixture. For pain with the mouth sores, ask your doc for prescription of magic mouthwash. MM is to be swished around in your mouth for a few second (10-20 seconds should be enough), then spit it out. Never swallow MM.

There are dental sponges. Its like a tiny green sponger on a long very skinny straw. Those are what I use to clean my mouth. They are nearly impossible to find. My ENT's PA brings me some from the hospital every time I run out. Since you are being treated at a hospital ask your nurses or anyone who can obtain the dental sponges. They will help. When I was doing treatments, I used a water pic on low with 1/2 water and 1/2 peridex. Pay very close attention to your teeth!!!! Do the flouride trays. Keep your mouth clean, you do not want to lose your teeth.

My nutritionist told me she went to a lecture about accupuncture and oral cancer patients. She told me it looks like it helps. Its way too early for you to be doing this. After you are finished and st least a year post tx then you may want to investigate it. Many have found dry mouth help with meds.


Keep your chin up, you are on the home stretch!!!

I agree with Christine on the teeth. The hygienist told Martin than when they start to go, it's like a ladder in your tights, there is no stopping the decay. You should by given some toothpaste with 5000 more fluoride than the normal ones.
Also a side effect you haven't mentioned (but that you might not get) is thrush. Look out for it. It appears quickly and it looks like you have white fur on your gums. It's very easily treated with antibiotics, but look out for it.
Good luck.

Hi Guys,

Thanks very much for the tips. My last radiation was last Wednesday 7/27/2011

I agree that post treatment side effects are probably the worst. I seem to be constantly nauseous, have thrown up more in the last four days than during treatment, gagging on the mucositis that continues to build up, and throwing up even more. As a result of throwing up there seems to be abrasion in my throat which hurts to even swallow water, not to mention that I have lost more weight in the last four days than during the treatment.

One thing that bothers me is sleep, or lack thereof. I seem to be waking up every hour (sometimes even more frequently) because my mouth is dry and I am afraid that I am going to gag. Have a few sips of water and then go back to sleep. Someone suggested using a cold mist humidifier (which I am right next to me), but it does not seem to help. Is this typical?

Hopefully these will all diminish soon, but any continued pointers would be greatly appreciated. Thanks again for your words of wisdom and constant encouragement. This has to be one of the toughest regimens, and each of you is a hero for having gone through it and made it well.

Best Regards,
Chetan

Chetan,
You are doing well--ya gotta believe that! It may start to improve 10 days after your last treatment or it may be longer than that, but it will. Hang on to that. Yes, I lost weight. I sipped any of my "meals". People brought food over--it sat in the refrigerator. Try to keep swallowing though, spit out mucous, swallow water, and get out the nutrition drinks.

I did not gag on mucous a lot--my pattern is that is ran down my throat and was at the back of my nose, but not in my mouth. Don't know why. But what you have described sounds similar to what others have, so I'll let them answer to that.

If you have meds for pain that might help you sleep. Afterwards is when I resorted to those meds. Sorry I cannot be more help. Soon you'll be done with this part of your recovery, and then you'll attain "hero" status as well. (not that I ever felt like one myself, that title belongs to some others on this forum)
Anne

Hi, Chetan -
contrat's on completing the radiation! My husband had trouble sleeping, and found that using a lot on pillows so he was semi-upright helped a bit. The pain meds helped the sleep, but he still up and down a lot.

My husband's pattern was like Anne's - he started noticing improvement about 10 days after treatment ended. His nutrition was shakes I made with packets of Breakfast Essential - sometimes I used dairy milk and ice cream, other times soy milk and icecream. Vanilla will probably be your choice for a bit.

You main task at this point is to stay hydrated, and keep some nutrition coming in. Your doctors can help with pain meds and numbing mouth washes, but remember that its a team effort, and (although it may not feel like it) you're actually the captain. Keep your support team aware of what you need, and they will help you through it.

My husband is about 4 months past his last radiation treatment - and we are just now getting packed up to go camping with his friends - I will be joining him next week. It didn't seem possible back at the end of the therapy ... gotta go back to packing now! Keep the faith!

Hey there - I totally know the feeling the memory is still nailed to my brain cells!! The mucositis does eventually go away - usually abbot 2 weeks. It just lessens - I too gagged and threw up because of it! It was brutal and I lost the bulk of my weight the two weeks after. The dryness is hard to - that's me every morning now! As for sleeping. The only time I really used pain meds was the post treatment weeks - even when I stopped I still took one oxy at bed time - it would nock me out cold! God luck and congrats at hitting the end!