#43475 06-22-2004 05:55 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Hi all - have searched through posts to see what the different experiences have been with radiation and one that my sister Cathy is experiencing is that her whole face has swollen (in addition to the sore mouth, raspy throat sunburned skin and now these cracked open sores on her neck).
Has anyone else experienced the swelling during treatment?
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#43476 06-22-2004 07:52 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Carol, my face became swollen during radiation, too. In fact, the left side (surgery side) is still swollen a bit. The overall swelling got better over time. I didn't have the sores that Cathy has but I had the others (sore mouth, raspy throat and sunburned skin) my skin actually darkened a lot on the lower part of my jaw during radiation. It has gotten better over time. Take Care and God Bless both of you, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#43477 06-22-2004 07:52 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Carol, I think that is pretty normal. I insited that my reluctant husband take weekly head shots of me during treatment and healing, so I could track the progress. I can see that my face and lips were very swollen. As I healed, they receded to normal contours. Just a part of the package, and unless it is pronounced and sudden, not a cause for worry, I don't think. | | |
#43478 06-22-2004 10:59 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Carol,
My face was also quite swollen during radiation, and for many months after. It was kind of a lopsided swelling -- more on the left side which received the most radiation. Eventually when the swelling went down, I ended up with wrinkles I never had before -- I call it the reverse facelift effect.
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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#43479 06-22-2004 04:41 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Hi, My face is swollen, and I finished radio 3 months ago. I saw one of my radio doctors at hospital the other day, and she said I looked well, put on weight - even though I had lost 6 kilos since I last saw her! Fat face, "lovely jowls", thinner body  Cheers! Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#43480 06-23-2004 02:35 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Thank you all - that's what the radiation techs have been saying too but I tell you, this is the best place to check these things out - where else do you have access to so many people who have actually "lived it".
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#43481 06-23-2004 03:47 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Carol (in RH),
I had the open sores on my neck too and used a product called Domeboro. It is an over the counter product and you mix the powder in water, soak a wash cloth in it and apply it to the burned area for about 15 minutes. I only used it once and it completely cleared up the sores. I also have a brown area on my lower jaw and neck from the radiation and I don't believe it will ever go away since it has been there about 9 months. I usually tan easily but don't want the sun beating down on that area any more so I haven't "blended" it in.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#43482 06-23-2004 06:09 AM | Joined: May 2004 Posts: 34 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: May 2004 Posts: 34 | Ed - what amazes me is that the doctors and nurses are looking at the sores and scratching their heads - I want to desperately give them all the link to this discussion board and tell them it's not unusual!! Look at these peoples' experiences!
Caregiver/twin sister to Cathy diagnosed with tongue cancer Feb. 2004/partial glossectomy and neck dissection Mar 2004/recurrence may 2004
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#43483 06-23-2004 08:27 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Carol,
They gave Dan silver nitrate to put on his neck and throat area after it started bleeding and seeping. I don't know how much it helped then but as soon as the treatments ended, his neck started healing.
Also, Dan lost his voice completely for 6 weeks during treatment. It started coming back within 2 weeks of treatment ending. It was a very hard time, but remember things get better!
Continuing to pray for you and Cathy!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43484 06-23-2004 09:24 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 | Carol in RH, Go ahead and give them this forum link! If we can help ANYONE I think we would. Collectively there are more patients here than many doctors would see in several lifetimes. They probably could use some real-time survivors input.
ALSO remember that we shouldn't put ANYTHING on the radiation burned skin unless the radiation people know about it. There are some things that will make it worse.
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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