| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | When I noticed my hallejuahs were getting somewhat raspy and the mucous worse, I did not worry. I cranked up the usual cures: water pik, seltzer water, extra humidity and steam in face with towel on head to no avail.
Starting Friday night it got so bad that I would choke and then have great difficulty breathing. By. Sunday night I was wheezing all the time despite having moved out to the couch to sleep at 90degree angle. My caregiver wife Bev's patience with my customary swimming in the existential River of Denial (my phrasing of the Nile is not just a river in Egypt) disappeared that night when I briefly turned purple and then struggled to breathe.
when I broke down and agreed to a Tuesday emergency ENT call, my ENT refused to see me but instead insisted I go to the emergency room but not my closest usual one, only the CCC one. After a Lombardi cancer center ENT scoped me, and I turned purple, My ENT had me admitted .. The tentative diagnosis is radiation induced CPOD (chronic pulmonary obstructive disease ) exacerbated by dysphasia (swallowing problem)
This is day 2 in hospital (my wife brought over iPad this morning as I did not expect emergency admission so packed nothing . ) Treatment is steroids, benadryl , prevacid, oxygen, Nebulizer and suction machine. Really has made a difference for the better.
Hope to be discharged once a Nebulizer and suction machine get delivered to my home since I can get prescrip steroids
Keep you posted
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | | "OCF Canuck" Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 57 | Charm
Sorry to hear of your ongoing after effects from radiation hope the steroids return you to your normal its amazing what your body can endure yet you still maintain your humour in your posts,
You are one tough cookie
Hope to learn more from your posts and knowledge as I continue this journey
46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Wow, Charm, that is one scary story. So glad you are getting medical attention and that it is helping you to breathe better. Sending you prayers and healthy thoughts. Thank God you have Bev! Take care of yourself.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Glad you went to the hospital in a situation like that. Feel better!
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Dang Charm. Are you trying to win the prize for the most horrifying experience we oral cancer patients/survivors have. If so, you're doing a good job. I'd say I had sympathy for you, but I really have sympathy for your wonderful Bev. I haven't been on the Forum for a while, but it seems when I do check back in, you're pulling another stunt. STOP IT! Okay? Our troubles just keep on popping up. I know I still have problems and it's been FIVE years. You and Bev do have my prayers and hopefully you'll have some good news soon. Keep us updated.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | 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 | Oh Charm! I am so sorry!!!
Please do what they tell you and get well soon.
(((HUGS))) to you and your lovely wife Bev. She is such an angel!
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh my goodness, Charm! You've had a rough few days, that's for sure. Glad you're a little better. And so glad you have Bev. She really is an Angel! Now do what she tells you and get better soon!
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I knew you had been awfully quiet...actually wondered if something might be wrong.
So so sorry Charm..what a major PIA. Glad you feel like they might be on the right track with the COPD dx and that the meds are helping.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Purple is never a good color for skin!! Thanks for listening to Bev. You guys are so stinking stubborn.
Get well soon. Enjoy the Nubulizer jitters!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | OMG - that sounds so......scary!!! I'm so glad to hear that the hospital admitted you (sorry that is where you needed to be at the time) and that the meds are working and you are feeling a little better. Hope you get out of there and home soon. Listen to your doctors and Bev! Give her a hug from me and thank her for taking such good care of you. As a caregiver our worry never seems to end. Big Hugs to you also!
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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