| | Joined: Aug 2014 Posts: 1 Member | OP  Member
Joined: Aug 2014 Posts: 1 | Hello everyone I am an oral cancer survivor 4 months post chemo-radiation. I work in the health care arena and what has and currently is happening to me is scaring the heck out of me. I had a rough time through treatment and now post treatment I suddenly started to have swelling in my neck to the point it was obstructing my breathing. After my first trip to the emergency room for my swelling, I have decided not to go that route again. I guess I am just scared and am looking for some support through this ordeal | | | | | 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 | Welcome to OCF! If you are having trouble breathing that would always warrant a trip to the ER or an ambulance. I suggest checking with your doctor about what the cause of this is and what you can do to help prevent it in the future. Something is causing the swelling. Could it be an allergic reaction, since it came on suddenly? Maybe a bug bite or bee sting?
At 4 months post rads you are still in the recovery phase. You will experience ups and downs with some setbacks thrown in here and there. Try to focus on your intake to help your body heal from what its been thru. Daily try hitting the minimums of 2500 calories and 48-64 oz of water. If you can continue to do this at least until you hit the one year mark post rads it will greatly help with your recovery. A complete recovery can take a long time, up to 2 full years! The main improvements you will notice will be in your sense of taste and fatigue.
Hang in there!!! This really does get easier.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Hi. Welcome and ditto Christine. Definitely call your ENT to report this as some swelling and internal scarring is natural from radiation but if it is affecting your breathing that is more than the typical swelling. Good luck don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | During his treatment, my son also had to make an emergency trip to the hospital because of his tongue swelling up causing him difficulty breathing. They told him it was a reaction to some meds he was taking and gave him a shot of benedryl to stop the swelling. It's definitely best to check with the ENT and find out why this happened so you can avoid it in the future. Everyone is different in their reactions. Just make sure the doctors know everything that is going into your body, even vitamins.
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Hello. I'm nearly 14 weeks out of treatment too, although I didn't have chemo, just RT.
Did the medical staff tell you what was causing the swelling?
The people here have gone through the gamut of side effects and anxieties which makes this site a comforting place to be.
Hope the swelling is sorted out soon:)
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | FVW, welcome and I'm sorry for the anxiety. I'm sure we all experienced that and continue to at times.
I'm curious if your place of treatment has an ER. I found going to the same place allowed doctors with experience to address some of the strange things the first several months post treatment. "Regular" ER's just looked befuddled and I made them call the otolaryngologist while I was in the ER if it wasn't at the oncology ER.
There are so many inflammatory responses as the body heals, that it could be anything. Any sudden onset difficulty in swallowing or breathing should be checked out as soon as possible.
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - swelling is fairly normal. Being in the medical field just makes everything harder - it's great for knowledge but that can be a drawback as well. Knowing the way things work in medicine and knowing the realities eliminates the occasional obliviousness some people allow themselves to hide behind - in others words it brings reality to the forefront and this can sometimes paralyze us.
If you've had surgery - as you know swelling is normal - particularly - if you've had a neck dissection.
Without knowing your full history it's hard to comment. Emerge can be useless - see your dr. Directly - most people who've never been through rads and chemo (even the drs themselves can't speak to the true fallout from the treatments, hugs
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]"Regular" ER's just looked befuddled and I made them call the otolaryngologist while I was in the ER if it wasn't at the oncology ER. [/quote]What kind of "uptown" place you live in anyway? You have boutique ER, regular ones and oncology and ...? Geez, learn something new everyday. Naturally the 99% world has no clue how the 1% get treated.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | FVS - welcome to the family. I'm 8 months post treatment (rads only) and one of the hardest things for me to learn was recovery isn't linear. Yes, they told me that after treatment I could expect at least 7 more weeks of bad side effects before things started to get better. I thought they would just get better slowly, every day a little better than the day before. Eventually, all the side effects would be gone and my recovery would be complete.
Boy, was I ever wrong. My recovery path has been anything but straight, it's a winding curvy road with lots of potholes. Here in my 8th month most food has gone back to tasting bad to horrible. I can eat everything but don't enjoy it nearly as much as I did at 3 months.
The nasty, thick sinus drainage, the junk that wants to stick on your throat, it comes and goes. Some days I'm hacking and spitting all day long, others almost none at all.
I suppose the one thing I haven't had is inflammation like you are experiencing. I wish I had something to tell you that would help, but sorry I don't. All I can do is agree with others before me, if you can't breath, get yourself to a doctor or ER stat. This isn't worth creating a life threatening situation over.
hang in there, it will get better.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | [quote=donfoo][quote]"Regular" ER's just looked befuddled and I made them call the otolaryngologist while I was in the ER if it wasn't at the oncology ER. [/quote]What kind of "uptown" place you live in anyway? You have boutique ER, regular ones and oncology and ...? Geez, learn something new everyday. Naturally the 99% world has no clue how the 1% get treated. [/quote] Not to hijack the thread but oncology ER? Really? Do they give you a pedicure during chemo too Uptown? lol I suppose not everyone gets treated in a hospital. Certainly when I needed an ER the best choice was not to go to the closest one but the one where I was being treated. The ER people werent oncologists but it was helpful that my file was on site. FVS certainly breathing difficulties is a scary and urgent thing to deal with and you don't have the luxury of choice. I hope they found the cause and it hasn't happened again.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
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