| Joined: Dec 2011 Posts: 2 Member | OP Member Joined: Dec 2011 Posts: 2 | Hi! Had my first radiation treatment for parotid-MALT today.
At the time, the worst challenge was handling the "mask", being locked onto the table for 20 minutes. (Claustrophobic me, of course.)
Everything was fine until about 5 hours afterward. Some of the area is still numb from the parotidectomy surgery (Oct. 28), but the rest of the area feels like minor sunburn. There's no redness at present, just warmth at the surgery site and a bit of discomfort like I got too much sun.
Is this normal? I didn't expect to have side effects so soon. Just checking.
THanks so much! | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Sally!
It would be a good idea to begin using a good skin cream to keep the area supple. Pat it on, do not ever rub it in. Apply it immediately after showering, your radiation treatments, and every few hours. Never apply the cream a few hours before your radiation treatment. I used Beta-Val prescription cream but there are several other types that work just as well. Ask your doc for a prescription.
Unfortunately everyone responds in their own way to treatments, medications, etc so its pretty hard to tell if its too soon for side effects. I cant remember being affected by rads until after about the first week or so of treatments. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I could feel immediate tightening of my scars - international and eternal from day one!! But my skin was barely affected - throughout treatment. I think it really depends on your skin type - and how quickly you heal. Good luck and do run it by your rads guy too. And as Christine said - cream!  take care!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Dec 2010 Posts: 11 Member | Member Joined: Dec 2010 Posts: 11 | thats good advice on the lotion. the dr. can prescribe something to help with claustrophobia. the worst of my side affects was about 10 hrs. later. good luck with the battle.
dx 5/15/09 stage 4 scc no positive nodes partial maxillectomy composit mandibulectomy fibular free flapleft neck dissection. 66gy all teeth removed surgery 7/8/09 peg placed 10/5/09 2 pets all clear 12/20/10.stage stage 2 melanoma 3/15/00 | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | I used to take my iPod and small speakers with me (they wouldn't let me use earbuds) and listened to music or a book. It was the only thing that kept me sane during those horrible 15-20 minutes being locked down to The Ride, as I called it.
And yes, get some of the prescription creams and such. I believe there are a number of good ones on the market that your medical team will be able to recommend. We're definitely all different and I too didn't start feeling the burn for a week or two. But then it got quite intense.
Hang in there!
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I took Zanax all throughout treatment and slept through most of it. It was a little more un-nerving in the beginning, when the mask was tight, but is soon loosened up as I lost weight.
Like David, I ripped my own CD and listened to music every session. That really helped. All of our treatment rooms had boom boxes.
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)
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Great suggestions above! If you are still claustrophobic, certainly mention it to your doctor who might recommend something that would help. My son also listened to a CD. It helps to be able to tell how close you are to finishing the "ride".
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Sally, if listening to something doesn't appeal to you or isn't an option and you don't or can't take anti-anxiety meds (which do really help), you might try some simple breathing and counting techniques.
My brother is a Zen buddhist and he suggested I simply count my breaths in groups of ten. Take long slow breaths, intoning the number in your head. Let each one out for a good long time. When you get to ten, start back at one. Don't think too hard about it, just let it happen and try to maintain the count.
Might be something to try.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2011 Posts: 61 | I do remember feeling tightness under my jaw even after the first treatment. I am not claustrophobic but I did find that closing my eyes and listening to the music helped me relax during The Ride. I never did burn very badly but I followed my RO's instructions on lotion application to the letter.
Also, Xanax is a a miracle drug. I had to take it right after my diagnosis and it did wonders for me. I only have to take it occasionally now.
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated") 33 rads ended 10/21/11. Dx Non small cell lung cancer 05/18/15 | | | | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | So - one less rad treatment to go.
It helped me to psych myself up during radiation sessions when I felt antsy. "My" music really helped. So did telling myself that the mask was not trapping me, it was helping me to hold still so the magic machine could do its job better. For whatever reason, it helped me to keep telling myself that the function was not to hold me prisoner, but to assist me.
I'm on the "Lotion, lotion, lotion" bandwagon, too - and - - - you know this is coming - - - WATER. Do well.
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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