Hi all,

My daughter had her surgery for base of tongue cancer in early Sept. She started her RAD in early Nov. After 3 treatments, she had trouble with an infection in her neck directly under her chin. Copious amounts of pus just started oozing out of her incision. The doctor feels the infection had been brewing for awhile and the RAD just brought it to a head.
Anyway, her RAD was halted and she was put on a strong antibiotic. About 10 days later, it seemed to be cleared up and she started RAD again. Again, 3 treatments and more oozing pus. This time the swelling is a little to the left of where it was before. She called the dr Sat and he phoned a prescription in for more antibiotics. She also has an appt to see him Mon, but he told her to go to her RAD treatment as usual Mon morning.
Earlier he said if she continued RAD while the incision was still open, the whole incision could fall apart.
Has anyone had trouble like this while undergoing their RAD treatments? Were you able to continue RAD while getting an infection cleared up or did you have to stop temporarily?
Thanks,
Rosemary

Hi Rosemary:

Good to see you back and sorry to hear your daughter is having some complications. I'm writing from work so it will be quicker for me to do this in list format bit here are my thoughts after reading your posts:

1. Is the doctor who is prescribing the antibiotics the surgeon who did her procedure? If not, it would be advisable to have the surgeon and the radiation (or other MD) touch base to determine if the infection can indeed by treated with antibiotics or if it is indeed a "pocket of pus" that the surgeon could drain. It would be better for the surgeon to handle anything like that since he knows the anatomy of the surgucal site and where he had placed suture, etc. best.

2. Was there a repeat CT scan done to evaluate the infection?

3. It is isn't always prudent to keep prescribing different antibiotics to treat an "infection" without knowing what the infectious organism is-that is how drug resistant infections get started then can't be tackled. Has anyone done a WOUND CULTURE which means swabbing some of the pus with a cotton swab and sending it to the lab for analysis (culture & sensitivity) which you can get a preliminary result on in 24hours. The C&S also tells what drugs the organism will respond to.

I am learning with Dave that when there are a lot of cooks making the soup, they often compete about who will stir the pot. If an MD told you her suture line might collapse, go back to that person and request an explanation of the risk of this happening against your daughter's need to continue radiation.

Hope this helps in the short run. Send more info and I will try to be mroe helpful.

Best,

Kim

Hi Kim,

Thanks for replying. Yes, it is the surgeon who is seeing her for this. He is going to re-evaluate Wed morning. If things aren't better, he will order a scan. They have considered that it might be a pocket of pus. Also the possibility of necrosis of the jaw since her surgery was extensive and included a mandibulotomy.

They have not done a wound culture but I will mention that tomorrow. Along with the swelling and pus (minimal now), she has severe pain in and below her ear and along her jawline. Hopefully it is just from the pressure on the nerve from all the swelling, but they are keeping a check on that also.

How is Dave doing? Heather should be at about the same point in her RAD as he is, but with all this, she is behind now. We expected the RAD to "knock her down", but we didn't expect all this. None of it is RAD related. They say it is too early to see any effects from that yet.

Thanks,
Rosemary

Hi Rosemary:

It certainly does sound like Heather and by proxy you, are having a rough time.

I think you should be adamant about getting wound culture to identify the organism-it is a simple swab of the pus that won't cause Heather any pain and may offer some additional helpful information.When people are immunosupressed after sugery and lack of nutrition, the "usual culprits" aren't always the ones that make appearances. Sometimes, organisms show up that probably would be less likely to appear if the person was healthier. I agre that is is unlikely problems from radiation.

Is she running a fever?

If necrosis is a fear, Heather needs a CT.

Be back shortly with more ideas and update on David-have to run to a meeting,

Kim

Hi Kim,

Actually, Heather said she thinks they were going to swab the pus Monday, but the incision had started to close and they didn't feel it would be beneficial to open it again. It hasn't pussed since, just a very small amount of clear fluid first thing this AM. They are considering a CT scan or possibly MRI. We had also discussed a PET scan earlier, although I don't know if that would be indicated in this case, but they will order something if things don't look good tomorrow when we see the surgeon.

They didn't prescribe a different antibiotic, just re-prescribed the same one she had earlier. She did have blood tests Monday and everything looked pretty good. We now think she has caught a stomach virus that is going around in our area. She is very nauseated and she hasn't even had the amifostine the last 2 days so it's not from that. Just saw the GYN today and she has a roaring yeast infection on top of everything else.

I told her she has to try to eat some yogurt every day whether she feels like it or not (provided she can get it to stay down). She definitely needs that beneficial bacteria now. Any advice on particular vitamins she should be taking? Some extra Vitamin A perhaps? Unfortunately her eating habits aren't the best to begin with and nutrition is so important now. I'm trying to get her to eat more antioxidant veggies and fruits. She tells me if she gets a PEG tube, I can mix anything I want to put in it. She'll eat healthy as long as she can't taste it!

Well, enough chit-chat for now. Thanks for listening and I'll await your update on Dave.

Rosemary

Rosemary,

hi. i'm 26 and had my surgery for oral cancer back in july. i finished my chemo and rad in september.
i just wanted to let you know that i went through all of my rad with an opening the width of my pinky finger right on the scar under my chin. i had a fistula develop which started leaking a little. my surgeon opened it up and said it would heal on its own once all the draining was done. the only thing the rad did was slow the healing process down. it's all healed up now and looks fine.
hope my news helps you a little.

Hi Jeanette,

Yes, your info certainly helps. It sounds like we don't really have to worry too much about the incision "falling apart". It has actually started to close again already. And they are continuing with the RAD, which is good because she is already behind schedule. The antibiotics seem to be working. Now if she can get over the stomach bug (at least, they think that's what it is).

Will post any new info after we see the surgeon again tomorrow. And thanks for responding. It's good to hear from someone who is so close to Heather's age. I wish you well in your recovery.

Rosemary

rosemary,

let heather know that if she ever wants to talk with someone who's closer to her age she can email me at any time. i know what it's like to be the "little kid" on the block...in my support group the nearest person to my age is 10 years older. being a young person with this disease really puts things in a different perspective.

my email address is: [email protected]

While this may be remote, it is important to eliminate it from the list of things that could be causing the stomach problems. You mentioned a yeast infection, but didn't mention if it was oral in nature. If she has had a rapid Candida bloom in her mouth, it is possible that this could also involve her throat and in really bad cases even her stomach. If Candida gets that far it can be very dangerous. In all likelihood this is the flu that everyone around me here has right now. But I just wanted this other possibility to be on your radar. Diflucan will clear up the yeast in short order with few side effects. Radiation and antibiotics together frequently yield fungus blooms

Hi Brian,

Thanks for the input. The yeast infection is gynecological, but yesterday I did notice a couple white patches in her mouth, which we will ask the dr about this morning.

After my post, I did a search for fistula to make sure I understood exactly what one was and the feeding tube info came up. So I read about the clogging problem when using anything "non-commercial". But thanks for pointing that out. We could have had some real problems had I not found out.

If anything new comes up at her appt with the surgeon this am, I'll be back.

I do have one question and I'm not sure I'll like the answer, but..... I know with being stage 3/4, her chances aren't very good. BUT we keep hearing to not go by the statistics. She's young and relatively healthy (other than the big C of course), she has a great team of aggressive drs, etc, etc. But seriously, of the people you mention sometimes that you personally know that don't make it...have you seen many young (20's/30's) people die from this? In your personal opinion, not medical statistics info, what do you think her chances are? Any better than the 20 - 30% in the statistics?

I know that is putting you on the spot, so if you don't want to answer, I understand. I'm trying to stay optimistic, but sometimes I think Heather still hasn't grasped the seriousness of this. Just trying to get her to pay more attention to proper nutrition is a challenge. I feel sometimes like I'm dealing with my 5 yr old granddaughter instead of a 28 yr old adult. I feel like I need something concrete to throw at her, i.e. "Heather, Brian PERSONALLY (from the forum, etc) knows X number of people that have died this year that were younger than 30".
Sorry, maybe this isn't the right way to be thinking.
Rosemary

As you are aware from your comments in your own post, there is no correct answer to this. Do very young and seemingly healthy people die from oral cancer, yes. Are they the largest group that form the statistics, no. But no matter what your age, being a stage 3 and particularly a stage 4, you have the odds stacked against you. Having said that

Hi Brian,

Thanks for the reply. I particularly liked your second paragraph. I am an agnostic and I found your musings about God's hand in the whole scheme of things quite entertaining!

I am trying hard to be gently supportive and not obnoxiously overbearing. Actually, I think Heather has tolerated me quite well so far in this ordeal. I sometimes have to bite my tongue, but I'm getting better at keeping any non-productive advice to myself, i.e. the "eat your veggies" advice.

Heather is feeling better today. She didn't get sick after her treatment, but she also didn't get the amifostine injection. She's going to wait til Monday to start taking it again. If she feels better all weekend, then gets sick Monday, we'll know it's from the amifostine. If she has to discontinue it, we have several $26 a day pills left. Sure hope someone can use them at the treatment center. Too bad you can't get refunds on unused prescriptions! :p

Rosemary

here's a funny comment about eating properly. i lost so much weight from my treatments and surgery, i have been told to eat as much fatty foods as possible. last month i was given the deadline of december 11 to gain 10 pounds. try as i might, so far i only have reached half of that goal. i'm hoping thanksgiving will help me reach the other half.

this has been quite a life change for me because my family has a huge history of heart disease. i have been buying low fat/no cholesterol foods for years. now i'm eating hagen das daily. it's quite an adjustment, but a fun one.

throughout the past few months, i have had the worst diet in the world......but i am eating the foods that i can swallow easiest and which taste the best to me. someday the good foods will come back in, but until then i just rationalize it by saying that i just survived something huge and get to treat myself for a while.

Brian,
How could you know what caused your cancer? I too, was fit, in good health, relatively young, 54,neither a borrower nor a lender, neither a smoker nor a drinker, and I have no clue what caused my cancer. When people ask me, I look at them sort of like it is a dumb question, but perhaps not.

Danny G.

Jeanette.

Thanks for the comments. It sure helped me to put the whole "eating well" issue in perspective. Heather won't have to worry about me pushing veggies on her for awhile!

Actually, we were told prior to the start of her RAD that she should eat everything she wanted to pack on some pounds. She was told to not worry about eating the second slice of chocolate cake, just eat the whole cake! It certainly is strange to hear that coming from a nurse or doctor. Esp. since she is a little overweight to begin with. It's also the first time I've heard that being overweight is an advantage.

She was doing okay, but since this stomach flu (or whatever it is) hit, she has lost 6 lbs. (in 1 week!) Her throat is starting to get sore also, so I'm sure the PEG tube will go in soon.

Thanks for the offer to e-mail you directly. Heather isn't connected to the internet right now, though, but perhaps I will take you up on it later if you don't mind.

For putting on weight, have you tried the cheesecake route? I forget who, but someone on the board said they had a 500 calorie slice every day when they were going through their RAD. The Cheesecake Factory stuff from Sam's Club, I think.

Good luck on your weight gain and many thanks,

Rosemary

How is Heather doing these days ? I had infection during the RAD too. As a matter of fact, I had another two infections after the RAD. Now, I am in Hyperbaric Oxygen treatment because my ENY Doc is concerned that hte mandible might get infected. I had nuclear scan on Jan 2 which came back OK, so the osteomyelitis is not an immediate concern now, I will be finishing HOBT end of Jan. All I can tell now is that the HBOT does help healing the tissue damaged by RAD, my throat pain was almost gone by now.

Hi WZ,

Heather finished her RAD Jan. 3rd. It was rough and she was in pretty bad shape, but the pain was starting to ease and her throat was feeling a little better by the 10th. Then over the weekend, she started to feel worse and by Monday the 13th, she was nauseous and couldn't keep anything down.

We also noticed a few white spots in her mouth, so we suspected candida. However, the next day when she saw the doc, the spots were gone and he dismissed the idea of candida. Figured it was stomach flu. (Plus she had just started a new med., which might have contributed to it).He told her she had to eat more. Since she threw everything right back up, that was easier said than done. Anti-nausea meds helped a little, but not enough.

By the weekend the white patches were back, she was still nauseous and her PEG tube area was sore and bleeding. So today we were at the doctors again. This time I had done my homework and was almost positive she had candida. From the symptoms, I think it is in her esophagus.
Anyway, we came home with Diflucan for the candida. Also had the PEG incision cauterized (there was tissue granulation which was causing all the problems).

Hopefully, the Diflucan will clear up the candida and she can get back on the road to recovery. It seems for every step forward, she has to take 2 back. But she has decided against doing the chemo, so the worst of it should be over.

I hope they can get your infections cleared up. Heather only had one during her RAD. And now this candida.

Wishing you a continued recovery,

Rosemary