| Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | I thought things were going pretty well with husband - no new aspiration pneumonia for a little over a year. He had been getting aspiration pneumonia every 3 months or so until he completely went to feeding tube only for all food and liquid. But now he's had another aspiration pneumonia that landed him in the hospital. Doctors have told him that he may have chronic aspiration and his only hope may be a tracheotomy, and even that won't prevent aspiration.
Wondering if anyone else suffering from long-term effects of radiation has found anything that helps with aspiration pneumonia, such as therapies for lung health, etc.
Thanks, Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Sep 2016 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2016 Posts: 111 | Before you jump to the trach. Does your husband sleep on his side or back? Chronic regurgitation during sleep could result in small amounts being aspirated into his lungs.
I have similar issues and found that sleeping with my torso at 25 degrees or greater angle from horizontal (floor) mostly resolved the problem. (Sleeping in a recliner is not great, but then again, I haven't had to deal with pneumonia since I started to do this.)
Also talk to your doctor about using a crushable version of Previcid or similar medication to reduce the reflux.
Good Luck
1997 SCC Tumor on tongue - Partial Gloss 1997 Met to Lymph Radical Neck Dissection / 2nd Partial Gloss 6 weeks chemo and radiation Brachytherapy 2011 Stroke 2014 Recurrence SCC at Base of Tongue / Hemi-gloss Free Flap reconstr from thigh PEG Tube Radiation Permanent Issues with speech and swallowing 2018 - Bleeding throat / mouth 2019 - Bleeding throat / mouth 2019 - 3rd diag Cancer SCC Base of mouth / jawbone 2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | My husband had silent aspiration. He did not have any indication that he's aspirating and so could not cough up anything that went in the wrong way. I hope that's not what your husband has. In John's case, the hospital speech path told me that he could have been aspirating on his saliva' it may be a small amount each time but over time, it would catch up with him.
Bjmpittsburgh' suggestion of sleeping at an angle is a very good idea. Please be very vigilant and make sure you take your husband to the hospital if he ever shows signs of fever, or shakes, or vomiting. They are all signs of pneumonia, as you probably know. Don't wait.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Thanks for the responses. Yes, he's been using a wedge to sleep at an angle for several years. I don't know how many cycles of aspiration pneumonia you can be treated for before the antibiotics stop working...and/or the body just can't take it anymore.
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2010 Posts: 72 | Hi Anita, My husband was getting pneumonia frequently. He's 100% tube, too. What has worked for him is sleeping almost sitting up and keeping his mouth very clean. He spends at least 15-20 minutes cleaning his mouth before bed brushing, scraping and rinsing. It lowers the bacteria levels in the mouth.
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments. | | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Yes, the keeping mouth clean component is important. I think the latest pneumonia was brought on by a virus that resulted in vomiting...and then aspirating vomit. That could be a hard one to prevent. He sees a good pulmonary doctor at the end of September. I'll bring up the prevention question to him and share anything I learn.
Thanks, Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | I think the visit to the pulmonary doctor may have helped with latest episode. We came up with a protocol in the event of aspiration, vomiting, etc. So when he started getting sick a couple of weeks ago, he had antibiotic ready to take immediately, started on nebulizer right away, stopped feeding tube for 24 hours, started on oxygen and hydrated as much as possible. That at least limited the severity of the latest episode and got him back on his feet quicker.
This latest episode was caused by vomiting again. Though I'm still trying to figure out if the vomiting was the cause of the pneumonia or was it a symptom of pneumonia that was already developing.
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Anita,
I think the question is best answered by your pulmonary doctor. When my husband contracted pneumonia from aspiration, he had a whole night of vomiting blood (dark, coffee grounds consistency) the night before he was admitted to hospital. The vomiting happened again when he had his second bout of aspiration pneumonia. There were times in between when he would get a virus in his lungs which is not normally found there and which was found when his phlegm was cultured. In those cases, a dose of anti-biotics took care of it.
I don’t know if this makes things any clearer for you, but I would ask the specialist if I were you.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Mar 2003 Posts: 251 | Sadly, my husband passed about a year ago. The aspiration issues, weight loss, etc from treatment became too much. Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
| | | | Joined: Jun 2019 Posts: 244 Likes: 2 "OCF across the pond" Gold Member (200+ posts) | "OCF across the pond" Gold Member (200+ posts) Joined: Jun 2019 Posts: 244 Likes: 2 | I'm so sorry for your loss
F 39 x-smoker no alcohol 05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide Pembro pre & post surgery RIG Glossectomy ND RFFR 08/13/19 RT x33 2x cispltin So far, no evidence of disease Now an author of a recipe book for mouth cancer patients
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