Hello all, just thought I'd introduce myself.

I'm currently in the middle of my chemo-radiation therapy.

I had a squamous cell carcinoma of the lip last year which resulted from sun damage (started as actinic keratosis). It was resected (twice) but later spread to a lymph node in my neck.

I had a selective neck dissection Dec. 24, and am now doing chemo and radiation. I have done one round of cisplatin, and I'm almost halfway through radiation.

I'm here looking for info, specifically regarding how best to cope with the acute side effects. My neck is already pretty red.

Anyway, best wishes to all here.

Hi George---can you describe which side effects are troubling you most? As for the neck, are you applying Aquaphor to it everyday? If you use the search function here there is a wealth of information on the website which will be invaluable to you. Sorry you are in this club, but you are half way done and before you know it you will be finished. Best of luck to you! Teresa

Try Biafine. It is prescription and works wonders. It is a deep wound cream and will help heal ND scar. It is also supposed to help prevent the burn. I wasn't given it until I was already fried, so cannot attest to that.

Take care,
Eileen

I'll ask about the Biafine tomorrow. Thanks.

My skin burn is the primary negative side effect right now. I've done 15 treatment so far (out of 33 total), so I expect this to get worse and worse.

My mouth is fine, i.e. no mucositis sores yet, but I'm drying up and I have this horrible sticky saliva that tastes awful.

My sense of taste went away all of a sudden last week, and so now my appetite is affected. I'm forcing myself to eat though, and I haven't lost any weight yet.

So far I've been using Lubriderm on my skin, but I really don't like it. It seems to irritate more than help.

I've been told that I can try an Aloe Vera based gel, but I don't know which one. Is Aquaphor aloe based?

Also, I'm very fair skinned, and used to get sunburned alot when I was younger. I always put Solarcaine on sunburns. Would it help with this, or at least the pain part? Would it be safe?

Thanks for you help.

You should ask your RO about anything you are thinking of putting on your skin as some things can actually make the effecst of radiation worse. I used Biafine during treatment and it worked really well. It kept my burn from getting bad until the very very end. But even the Biafene you should use after your rad. each day and not put on the morning before you get radiation.

You are doing pretty well to have no signs of mucositis at the halfway point. Hang in there and keep coming here with questions.

Nelie

I used Aquaphor during 7 weeks of 5 day a week nuking. It worked OK, but none of these are going to completely eliminate the tissue damage that is going to take place. I wouldn't count on anything that helps sunburn to help your skin. You are getting so much more damage than you would ever get from the sun, the two are not even comparable. What ever you choose, pass it by your docs first. Go into your treatments with NOTHING on your skin and use the lotions after treatments.

George,

You will be entering a stage where getting enough calories into your body on a daily basis will become challenging due to swallowing problems, nausea, malaise, etc. A lot of us used a product called Carnation Instant Breakfast VHC which packs 560 cals in a small 8 oz can. I'm not sure if it's available in Canada but I assume you can order over the web. Check it out. It was a lifesaver to me, even months after Tx stopped.

By All means, keep up your calorie intake any way you can.

Thanks everyone for all your helpful input!

I can't find Aquaphor in the drugstores. I'm in Canada and they don't seem to carry it here. I have a friend in Boston, and so I'm going to see if he can grab some and ship it to me quickly.

I'll be bugging my RO for Biafine as well.

My weight is still good. And I'm feeing fit as well and hitting the gym 4 times a week right now. That's a bit less than normal for me, but it's enough to maintain tone and fitness if I can continue it.

They stuck me with a PEG tube when I started, but I haven't used it yet. It was annoying and painful at first, but now I can do crunches and other abdominal exercises without pain.

However, food really tastes bad right now. I'm consuming alot of protein + fruit smoothies, and adding in high calorie stuff like ice cream and coconut milk to maximize calorie intake and it seems to be working. I'm finding that cold stuff through a straw is easier to get down than warm stuff that needs some chewing.

Another concern however is chemo. 3 weeks ago I did my first round of cisplatin (100mg/m2). I was supposed to do round 2 this past Monday, but my neutrophil count was too low. We tried again today but it's still too low. They want to wait another week now before trying again.

The medical oncologist says I appear to be sensitive to the cisplatin. Is this sort of thing common? Given that I'm 44, very fit physically,and eating well, this is a surprise to me.

I was fairly fit going into chemo and rads, and my second round of cisplatin had to be reduced by 25%. I was surprised too, but my MO said it happens. Sometimes they skip the third round of cisplatin, depending on your reaction to the radiation at the end of treatment. If they think the rads hit you way too hard they won't give you the third round of cisplatin.
Sounds like you are handling treatment super-well. Good for you!

Cisplatin (and radiation) hit me hard. I had to have my second round of cisplatin a week after the ideal schedule because my neutrophil count was too low at first. As for the third one, I was neutropenic and just was not getting any better for a couple of weeks so they just skipped it. There's research that actually shows no diff. in the effectiveness of concurrent chemo and rad. if you get two vs. three rounds of chemo. How hard these things hit you don't necessarily have a lot to do with how fit you are.

Nelie

Thanks Nelie, that's good info.

GeorgeH,
Brian is, as usual, right on the mark. Always discuss problems and possible solutions with your Docs. What worked and was acceptable for one individual may not be good for you.
I hope all is going well with your treatment.
Cheers,
Mike

Also be careful of Cisplatin and hearing loss. If you hear any ringing in your ears tell your MO immediately. I didn't recognize "ringing in my ear" and now I have permanent high frequency loss in both ears.

Also CIB VHC has tons of protein.

I did use Aquaphor on my skin before they gave me Biafine and the Aquaphor was much, much less effective than the Biafine which they gave me late in the process. I even have an Aloe product called Aloe Relief that I have used for years that seemed to work better than the Aquaphor. Biafine cannot be used on open wounds so if your skin has now cracked, you would have to wait for that to heal before using. Ask your doc about it.

Take care,
Eileen

We thought the aloe vera gel worked better than the prescribed aquaphor...healed better and was way less greasy.

Deb

George

The BC Cancer Agency suggested I use WellSkin Glaxal Base. It's obviously available in Canada. It worked great for my skin, apart from some minor itching I didn't have any skin problems with 35 radiation sessions.

Best of luck,

Sam

I was also given someting called "Radiagel" to try by the radiation oncology nurse. If I am recalling right, that helped somewhat but the Biafine worked better.

Nelie