yesterday i was asked by a hospital worker to talk with a head&neck cancer person who is in their 6th week of 7 week treatment. the purpose was to encourage them to continue treatment.

this normally is easy for me to do. however in this case i was quite shocked by what i saw. the patient has a tumor in the jaw region and extending into the throat. an area of skin from the cheek down to the thoat has a raw open sore that a nurse had just treated with some ointment. a drip was ongoing to reduce the chance of infection, yet i was told that there was already some infection.

i was later told that the person has lopus and until recently was not getting sufficient protein so the skin was slow healing. a peg is now in place.

yet i wonder,
when is radiation delayed to allow skin to heal?
and
how frequently do folks get such painful sores?

during my treatment, i did not see anyone in such poor condition.

cu,
larryb

Larry,
At about two weeks after my last rad treatment, I had raw exposed flesh on a 4 inch by 6 inch area of my neck. I had been receiving twice a day rad treatments every other week over a ten week period, a total of approx 7100cGy's. My burns were worse than most of those I was in treatment with, but apparently not unexpected. I found that a combination of silver-sulphadine cream and a"second skin" product called Vigilon helped it to heal rapidly. My burns were probably worsened by my fair skin and by the Iressa (I say this because they had me discontinue the Iressa for 2 weeks while the burns healed). In the program I was in, we had a week off in between the twice a day sessions to heal/recover, so I don't know how a regimen of seven weeks of radiation would affect someone. I'm sure there are others out there who can shed some light on that.

Good Health,

Chuck

Larry and Chuck,

I had a total of about 7 weeks of radiation and there were a couple of times when the internal burning was severe enough that I begged for a delay of a day or two (and got it). My external burns never got to the level you described.

Cathy

Larry,

I am one of the fortunate in that during the seven weeks, I did not get burned to the point of blistering or open sores. However, I did see quite a few who I felt were burnt horribly. On my last day of rad I told one of the techs that had I been burnt that bad I would have had to look hard at continuing. She told me that everyone has the option of taking a "break" from the treatments, but that they don't tell anyone this until someone voices their desire to discontinue the treatment. I told her that that was the most barbaric way to treat someone I had ever heard of. No good reasoning was given. I had hoped that since those days that maybe people would be treated with more compassion and sense.
Guess not!.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Hi Larry,

Fortunately, I never experienced burns to the degree you describe, but a fellow patient I became friendly with at Mass General developed such bad burns that he spent several days during his treatment in the burn unit, suffering from 2nd degree burns. Both sides of his neck were raw, open sores that constantly oozed.

Nonetheless, his doctors only postponed one treatment and urged him to press on to completion. He experienced his most severe burns during the last of his 8 and 1/2 weeks of radiation. His doctors did not seem surprised nor dismayed by the extent of his burns. I suspect that some people are much more sensitive to radiation than others, and theirs is a harder row to hoe. Best, Sheldon

I had an open sore at base of my neck that took quite a while to completely heal up from rad. I was applying radiogel 3-4 times a day to keep the crust on most of my neck pliable so it wouldn't crack & split too bad. I remember it was pretty discouraging at the time & I wanted to quit, but the techs in radiation talked me through! Erik

Before the newcomers here the crap scared out of them about radiation side effects, most people experience a mild sunburn effect. One important thing to remember is to have the skin dry and ointment free BEFORE getting a radiation treatment. Many things can cause a "bolus" effect (i.e., enhancement of the radiation effect). Any soothing creams and lotions should be applied AFTER the treatment session. Usually the radiology techs can provide you with appropriate lotions for radiated skin care such as "Radiacare". Whatever you do -DON'T SCRATCH IT!
Some peoples skin just reacts poorly to radiation. Chemotherapy may also play a role here.

In full agreement with Gary here. Add: that you Must NOT use any treatment for burns without first confirming with your radiation oncologist. There are products that could make things worse! I was one of many that had very little external side effects.

As to the idea of pausing or stopping treatments, at certain points in the course of treatments pausing is allowed without affecting the success rate. I had an unscheduled pause due to a machine breakdown for 1 week before the last 7 treatments. There are other points when pausing would not be a good idea. Stopping the treatments entirely is not a good idea.

Larry, I thank you for helping this person. Do the best you can.

Excellent point Gary. I should point out that my experience was the exception. There were sixteen people in the HON program at U of Chicago at the same time I was there, and I was the only one with burns this bad. Though the severity of my burns was bad, it was not the norm. My worst weeks were after the last treatment, so there was no concern about having to scrub off the neck prior to treatment.
Also of note is the fact that it healed up quite nicely-- no scarring from the burns.

Larry, I would also like to add my thanks for your taking the time to speak with fellow patients. I would have welcomed a visit from a survivor during my treatment. Good Work!!

Good Health

Chuck

Larry, just to add my 2 cents, I had some minor burns that bled a little, but nothing serious. A few weeks with a white cream and keeping the wounds clean and they healed right up. No problems. And I had about the worst outside skin reaction of any of the folks I saw who were being treated at the same time. So I wouldn't worry too much, as the treatments are not that bad and most people have minor reactions.

I will chime in too, Because I have extemely fair skin, I experienced serious (not severe) burns on both sides and the back of my neck. These were open and oozing. The skin didn't break until probaby the last treatment if I remember correctly. It was the two weeks afterward when I needed to apply ointments and burn dressings. I had pictures taken weekly to track the improvement and it took about four weeks to heal completely. Absolutely no scaring. There was no pain until the last couple of days of rad, and with the Fentynal (sp?) patch I was very comfortable. Since I was treated, I understand there are several new lotions, as Gary said, to apply following treatment. This should scare no one because like Chuck (hi, Chuck - I went to school where you were treaated!) my case was the exception. My ENT and Rad Onc still ask me to speak to anxious patients, but they both ask that I NOT show the pictures (grin).

Larry, as others have mentioned, neck burns is definitely common especiallly when the radiation dose is heavy. When I was in about 4 to 5 weeks of treatment, nothing changed to my skin and I thought I could be that lucky to escape any burn. Then I was totally wrong, it happened all so suddenly that my skin got bruised and became sun-burned to the stage that when others looked at me, they looked scared. There was occasional bleeding around the neck and the most unbearable moment was when the nurse had to bolt the mask around my neck before treatment. It hurt so much that I once begged my doctor to stop my treatment. He didn't support any delay and the last few treatments were a real torture. As I was at that time hospitalized, I had nurses take care of the wound and they washed it and applied dressing on it daily until I was discharged. They didn't put on any cream and just placed a clean 'cloth' on top to cover up the wound. As I was on regular pain killer at that time, I didn't feel much pain. The skin burn took about 3 weeks to heal but now, there are still 'scars' on my left shoulder and anyone can tell easily that the skin was once burnt. Other than that, it didn't cause any pain after it healed and I won't regard this a serious side effect of radiation.

Karen

I have a feeling how badly one sunburns might be a predictor of how one reacts to radiation. I don't get sunburns easily, so rad just produced some dry skin which peeled ala "Goldmember"..

However, rad to tongue got so severe they had to stop treatment for a week to get me re-fed and let the tongue heal enough so I could even drink Ensure (no peg). This was in 6th week of 7 week course of RAD.
Bob

Thanks for everyone's input. like many things, the more we know, the better we do.

today i made another visit to the hospital and our friend is doing much better. the open burns are healing over.. even though treatment is continuing... in fact, two more days and its over! just in time for the holidays.

i must say, i was very suprised to see the dramatic improvement... and wonder if better nutrition (more protein) due to the new peg is a significant factor.

best wishes to everyone,
cu,
larryb

Good to hear Larry!


Hey Bob, your theory might be correct except for me, I get sunburn when there is a full moon but I had very little external trouble with radiation. (and that was from a pretty old XRT machine)

Mark,

Are you sure that isn't "moonburn"?

Only if my belt is way too loose!