#37962 12-17-2004 10:49 AM | Joined: Sep 2003 Posts: 153 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Sep 2003 Posts: 153 | 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 | | |
#37963 12-17-2004 02:51 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | 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
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
#37964 12-17-2004 04:24 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | 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
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#37965 12-17-2004 05:03 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Nov 2004 Posts: 104 | 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 | | |
#37966 12-17-2004 07:43 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | 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
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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#37967 12-17-2004 07:48 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 261 | 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
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#37968 12-17-2004 08:18 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#37969 12-18-2004 06:02 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | 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.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#37970 12-18-2004 09:58 AM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jul 2004 Posts: 188 Likes: 1 | 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
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun. It's always something "Adversity doesn't build character, it reveals it." | | |
#37971 12-18-2004 04:28 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | 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.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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