| Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | Charm, So glad that you are home and still out there. You are truly one of my heroes!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | 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 | So sorry to hear about your new "complications". What are you using in the nebulizer? The reason I ask is you should be using Mucamist, aka Acetylcysteine. It issued for things such as getting the thick goo from around the lungs as well as the entire airway. It then bonds to the DNA and literally converts the mucous to a salt. 3-4 times a day would do wonders for the breathing although it may not feel like it while you are nebulizing. Cough up what you can while doing the nebulizing and after. Have you thought of a consult with a neurological pulmonologist? The main reason I ask is that some of the issues we face relate to neurological/nerve denervation from radiation and surgery to the neck and most doctors don't get it. Sometimes oxygen is good but if your problems are related to nerve or neuromuscular issues, oxygen can force the CO2 down to accumulate to the bottom of the lungs while you feel refreshed from the oxygen and oxygenated blood. An FCV will be done to measure your lung capacity if they have not done one. With breathing issues developing, you might want to check that won't. They also specialize more with what some of us may be dealing with and they understand much more about assistive devices to help your breathing such as an IPPB, cough assist, BPAP for relief breathing or even an ambu bag to help expand the chest from the inside. Second opinions are often good anyway. I was sent to a regular pulmonologist and he said I had diminishing capacity but really just needed to try harder to breath.
Many of us that get the thick goo coming back years later battle trying to find the right doctors because we fall outside of true cancer world. It can coat the airways as well as the digestive track and that is what often kills cystic fibrosis patients. I started coughing up post nasal drip plugs as the constrictors atrophied and choke on them if I lie on my back. When it gets so bad I am coming up a pint a day, I drink a half a bottle of Acetylcysteine, approx 5 ml, and within 12 hours I have some gut wrenching dry heaves with goo pouring out my mouth and nose. It actually clears out my entire digestive track and the result is improved nutrient absorption. Warning, though, drinking it is not for the faint of heart. Isis like rotten eggs. I just pinch my nose and down the hatch. The last one lasted over 2 months as our weather changed to warmer. Doing some nebulizing as we speak and we had a bad storm front roll through Friday and 85% humidity which made it tough with the mountain cedar pollen making the goo flow.
Keep an eye on barometric pressure and relative humidity. Sometimes quick drops in pressure and high humidity make breathing nearly impossible. Others can be affected just the opposite. I hope this helps in some way. Hang In there!
Be well but be vigilant!
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
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | You did read my sigature line right?
Kickin' ass and taking names is what I do for a living!
Sometimes it simply must be done, 'cuz really, we'd miss you!
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | 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 | Uptown Thanks. I am noticing that the late recurrence of "goo", choking mucous, etc does seem to fall into a twilight zone outside the standard cancer zone. Certainly, the posts on OCF concerning mucous and choking indicate that it is a problem. This third round of radiation really triggered it worse than any of the prior 5 years.. My nebulizer is the basic home version so just compressed air, no oxygen. I;m using the generic version of DuoNeb duoneb insert I will see about getting a pulmonologist referral and a FCV Appreciate the extra input 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
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