I've just started radiation - today was my second treatment. This afternoon, a few hours after the treatment, I started noticing a very uncomfortable "puckering" feeling in my left cheek - enough to make me moan out loud and grab my face. It comes and goes. It feels like I'm getting ready to suck on Sour Patch kids and my body is anticipating it - only I'm not and the discomfort is way worse than when eating sour candy. Also - suddenly my neck incision is painful and tender again...

I'm not a happy camper as I expected that the discomfort/pain from radiation wouldn't start until the 3rd week. Has anyone else had these issues? Any advice for dealing with it?

Lisa, each person reacts differently to rad. tx. Some sooner that others- it is important for you to start writing in your journal what is going on on a daily basis-just as you described here. Ask the rad Doc about where the radiation is directed, if it is stronger at some places than others. Talk to the technicians and nurses at the end of each treatment about how you are feeling and what might happen tomorrow. Stay ahead on having good pain meds. available at home. Stock your pantry with easy to swallow food [do you have a peg?] Buy a couple of bottles of Pedialyte to put in the pantry for extra hydration benefits[you can also try Gatoraid] You gotta be ready to roll with the punches. Amy in the Ozarks

Thanks Amy - I'm also on Cisplatin - so maybe adding the radiation over the past few days has caused side effects to show up early. I don't have a PEG - I have one doc who says I'll definitely need one, two who say don't put one in until I definitely do need one - so I decided to go with the majority and wait until there is a definite need. I'm doing well with drinking - not as great with eating, but today the nausea was much better and I was able to get down more calories. The weird puckering/painful stimulus is really unpleasant - hopefully it'll go away soon!

Lisa, the combination of rad. and Cisplatin is likely to present you some challanges as you go along. Just keep on taking the best care of yourself that you can. And hopefully you won't make yourself wait until you get in real trouble to get a peg if it comes to that. Amy in the Ozarks

Lisa,

As you see I also had Cisplatin but now with my permanent hearing loss I wish I would have had Carboplatin. JMO. Have you discussed this with your MO?

FYI, My first 2 weeks went OK with Rad and my first chemo (given to me the first day of rad) went OK. It went quickly down hill for me after that. As we are told 1,000,000 times, everyone can react differently. Yes I agree that's possible but the overwhelming majority of us suffer like dogs between the 3rd week of Tx and the 3rd week post Tx so hang in there.

The reason I point this out is that I was made to think by my RO & nurse that I was having an unusually tough time and it played on my physic the whole time. I kept thinking maybe I was having a bad time because my cancer was really bad ( an oxymoron). I did not find this site until 2 weeks post Tx so I didn't have the advantage of the group telling me my reaction was NORMAL and it made me happy and mad when I got my responses from my first post. I just want you to be prepared in case you are normal.

That said, there are definately things YOU can do to make the Tx go better:

1. Drink at least 48ozs water every day;
2. Drink at least 2000 cals of food every day;
3. Communicate with all your docs constantly about anything that bothers you and if what they prescribe doesn't help, communicate that;
4. If you do get a PEG, continue to exercise your mouth and throat muscles;
5. Don't worry about sleeping a lot, your body will need it; and
6. Talk and or complain to us as often as you feel like it. We, unlike your well intentioned docs & nurses, have been through exactly what you are going to go through.

Hi David
Thanks for responding. I did start having ringing in my ears about 5 days after my first dose of Cisplatin. I called my MO and she stated that she would lower the next dose by 20%. My hearing seems to be ok as far as I can tell, and the ringing is lessening over the past couple of days (it has been 9 days now since the chemo).

I know what you mean about well intentioned docs and nurses - I happen to also be an RN but with very limited oncology experience. I could never pretend to know everything there was to know about what my patients experience like many of my own nurses do! However, I can say that they do listen to me and that every complaint I've had has been answered satisfactorily. I'm getting treated at MDACC in Orlando - they've been awesome.

The weird pucker feeling is gone today - and I'm noticing less thin saliva and more very thick gunk today. I'm thinking that maybe I was feeling a salivary gland giving out?

Lisa,

I was told by my MO that the ringing in the ear is damage being done. I'm not saying you can prevent it but that's what I was told AFTER the damage had been done. My high frequency hearing loss is not as bad as say the dry month or lack of taste or thyroid problems that I am also left with but it was a comment my MO said AFTER my damage was done that made me question the Cis decision to begin with...he said " I wish I had known (I guess my reaction to Cis) I would have switched you to Carboplatin since it isn't known for causing ear damage and it's just as effective." I naturally responded, "then why didn't you put me on Carbo to begin with?" and he replied...not everyone suffers hearing damage and Cis has been around and tested a lot longer than Carbo.

Also, I did a post months ago on my bodies' reaction to Chemo and Radiation. If you want I can repost for you or send it to you on a Private Past. Just let me know. FYI, it is not a PG rated post.

Hi David,
I believe that I did already read your post - I've been hanging around since I was diagnosed back on 3/15. I frankly stopped reading about individual people's experiences for a while as I was really finding that I was much more anxious after reading the horror stories. It is bad enough that I'm on this pathway - but since I don't have many other choices right now - I'm going to have to make it through this trip. As my husband and I were saying today - the fear and anticipation has been far worse than the actual experience - not to say that the experience has been fun (hardly!). I know that every person is an individual, and what happens to one might not happen to all. There seems to be a very fine line between educating yourself and scaring the bejeezus out of yourself. I'm trying to gracefully walk that line without tipping into fear.

fwiw, Lisa, I had ringing in my ears during treatment but no long term hearing loss. I don't think ringing during treatment *always* indicates hearing loss later. You are so right about the line between educating yourself and scaring yourself.

Nelie

Hi Lisa, It is a fine line and you're the only one that can decide how much information is enough. It sounds as if the team is being very responsive to your symptoms so that's encouraging.

Jack does have a high frequency hearing loss after 4 cycles of cisplatin but it's something he can live with - and he still feels that cisplatin was the right choice for him because his cancer was very advanced and it's got the track record. It's a very personal decision on what you're willing to risk and put up with. There is no universal treatment plan, it depends on your specific issues.

If it starts looking likely that you do need a PEG don't wait too long or they may not be able to put it in. Again, no right or wrong answer there but Jack found it very helpful towards the end of treatment. It's critical to keep swallowing something every day with or without the PEG as that will help with recovery. Also stretching your mouth to prevent trismus does wonders.

I hope it continues to go well for you.
Regards JoAnne