Does Coughing require 24h watch?

[BJeng]

DH - Adenocarcinoma 3B T3N2M0 inoperable, very large mass in RML plus lymph nodes 10R, 11R, 12R, 4R and 7. Starting carboplatin and pemetrexed 1x every 3 weeks for 3 cycles and daily radiation for 6wks on Mon.  Because of the radiation field, his esophagus will be swollen and irritated with difficulty swallowing and cause coughing!  His overly-sensitive gag reflex already makes his current chronic coughing into a dry heave that often has me holding my breath wondering if I need to dial 911, it's hard to comprehend it's going to get worse.  The oncology and radiation education sessions today with all the signs to watch out for have me on edge and wondering if I need to be available/near 24h?  Should I limit how long I do go out for shopping or church? They said we both need to be hypervigilant against infection so I can't serve in my church's nursery/children's programs and they want me to limit my public outings as his primary caregiver.  They weren't very direct (use your common sense, take care of yourself) and I know we don't know yet how DH will react, so I was curious about some real world examples?  I would hate to be out for a 20min dog walk or even for 2h errands and come home to find him with chills or vomiting or unable to breathe.  I'm planning on "cancer shopping" this week, only certain soaps and lotion allowed, getting a blender because they expect he will only tolerate soft foods, getting different protein shakes and pedialyte to see what one he likes, stocking up on what I can.

Thanks for any input, I guess this should have gone in Caregiving Forum? But I'm also curious about patients and how they felt being alone during treatment. 

Jeng

[LexieCat]

I certainly didn't need anyone around. My daughter came out to stay with me but she returned home after three months. I enjoyed the company and she was good to have around to help with certain things but didn't need any help otherwise. I didn't have radiation, but I did have carboplatin and pemetrexed.

Infections build gradually--it's not likely to attack someone so fast they can't wait an hour or two for the caregiver to return. If you are worried, have him keep a cellphone or smartwatch nearby so he could call you or 911 in case of emergency. But really, I don't think an emergency like the one you're envisioning is likely.

[Judy M2]

I had very painful esophagitis from chest radiation. My best advice is to get palliative care on board now so when the pain starts, it can be taken care of quickly. For coughing, his pulmonologist can prescribe a cough medicine (I used Robafen). Palliative care can also prescribe morphine for air hunger if shortness of breath is an issue. 

When I started chemo back in December 2019, I stayed home because I was afraid of getting the flu (even though I had gotten a flu shot). That was pre-Covid, of course, and even though I'm no longer in treatment and triple-vaccinated, I'm really not going anywhere these days.

Stock up on some Ensure or Boost Soothe. When I had esophagitis, it would take me an hour to get one Ensure down. I would not stock up on anything else, because with esophagitis you can tolerate something and an hour later, you can't get it down. It will be trial and error for a while. You can also try alkaline water. It worked for me--until it didn't. 

If DH is unable to drink enough liquids, ask for regular hydration at the chemo infusion center to prevent dehydration. I went 3x a week. 

I had a particularly rough time but the good news is that it worked and it's all behind me. Best of luck. 

[TJM]

I 100% agree with Judy. 24/7 is probably not necessary but do whatever you two makes you feel best. 

All the best

Peace

Tom

[BJeng]

Thank you LexiCat, Judy and Tom.  Judy - the RadOnc Dr. said he will get esophagitis and I just can't fathom his coughing fits with esophagitis. He is on Codeine-Guaifenesin for his coughing, he also has Albuterol puffer but is saving it for a truly desperate unable to breathe situation.  Last night DH said he's scared of drowning if his lungs and throat will swell for all the sputum.  I have started a new list of questions/concerns based on the meetings yesterday and will add your advice of palliative care and hydration, and I remember them saying they can give him fluids if necessary.  We have a sample of Collagen Chocolate Protein powder which he'll try today, he likes whole milk. However I understand a whole lotta change in taste and appetite is on the horizon. He's lean (5'10" 161lb) and unfortunately he lost 2 pounds in 5 days and treatment hasn't even started. The recommended high protein diet will be a challenge, he's a bread, pasta, cracker, chips lover and only drinks coffee, OJ mixed with carbonated mineral water, or LaCroix mixed with lemonade, beer and wine.  The purpose of his treatment is listed as "curative" so that's a positive 🙂 

[Tom Galli]

BJeng,

How best to deal with treatment caused coughing? Here are some things that worked for me.

First, get a house full of .1 micron HEPA filters. Put them in every room and change the filters regularly. Do everything you can to eliminate strong odors like after shave, perfume, cooking fumes and the like.

Encourage regular (six times per day) Albuterol use. This soothes air passages and makes them less susceptible to irritation. Discover the benefits of a steam shower. We purchased a small shower stool and I sat in it while the shower blasted full hot on a tile wall. Breathing the steam was very soothing. During my radiation, I had one 3 or 4 times per day. I still use this technique to break-up a chest cold.

In my 4th line treatment, I discovered severe appetite loss. My wife who is a dietician and RN churned up chocolate mint ice cream that included crushed mint Oreo cookies. She read that mint flavoring is often appreciated for those who struggle with taste sensation. I lived on ice cream and I maintained my weight.

Stay the course.

Tom

[Judy M2]

I agree with Tom re albuterol use. Don't be shy, that's what it's for! Nebulizer treatments that they use for COPD are effective too. A pulmonologist can prescribe those. Before esophagitis sets in, load him up on high-calorie foods. If it's burgers and pizza, then that's fine. Put weight on him now because weight loss is inevitable with esophagitis. While ice cream is good now, when the esophagitis hits, acid reflux may become another painful problem. Protonix (prescription acid controller) every day helped, and I had to eliminate dairy products at that point, as well as acidic foods of course. I substituted mango sorbet for ice cream, and it was yummy. My pain from acid reflux was heart-attack level.

I had esophagitis for about 5 months. It finally healed, and an endoscopy done in May 2020 showed a normal esophagus.

[LexieCat]

I think everyone's given Jeng great advice about caring for her husband's coughing and esophagitis. I think, though, one of the main questions she had was whether he needed 24/7 care, or whether she could take an hour or two here and there to run errands, take some time for herself, etc.

I gave my opinion, but I've never been in exactly that situation with severe coughing and esophagitis. Could some of you who have BTDT weigh in on that question?

[TJM]

I also agree with Tom G on the Heppa filters. When my son had his battle with an immune disease it was a necessity.

FWIW...the radiation seems to have done permanent damage to my esophagus. Two biggest issues I have are painful swallowing and having food/drink go the wrong way. I take a low dose of oxycodone for the painful swallowing and it really helps. Better than the cough syrup. For the swallowing issue right now I just try to be really careful. So far none of the suggested treatments sound very good to me and I'm feeling the best I have since treatment started and can live with it. No major cough however...just a raspy sounding voice.

I'll be switching providers soon..so will see where that takes me.

Peace Tom

[BJeng]

Thank you, I'm taking notes on your tips and sharing them with DH. And thank you LexiCat for getting to my question - I guess since everyone's different no two people will respond the same in a similar situation - I just wonder if the patient who is coughing uncontrollably with swollen esophagus is afraid to be alone in such a condition that appears teetering on need of urgent care. Listening to DH cough, it's very difficult - when it's prolonged I find myself holding my breath, clenching teeth and stomach and my shoulders are in my ears until he's stopped and I know he's okay.  I guess we'll just take it a day at a time. He does have a cell phone, but when he's hacking - it doesn't seem like he has any presence of mind.  I can also tell it's triggered by stress and by carbonated drinks, but I can't control or force him to change.  I'm trying so hard to recommend food to put some weight on him, but he's just not interested at all and he's not eating much (barely finished a bagel for breakfast, cheerios for lunch and that's it for today, his dinner is still waiting and it's 8:30p), he's very stubborn. I think in his mind giving up his beer and wine starting Monday through chemo will be the toughest part as I do believe he's addicted.  I told him to use the Albuterol to open up his lungs and ease them as you've all recommended, but for some reason he doesn't want to, I will try and persuade him again since his esophagus and lungs will be swelling.  He has a jar of honey on his desk and he likes his Ricola.  I bought some protein drinks, whey protein powder and and Biotene as recommended mouthwash.  Will buy a blender before Monday.  I will keep trying to appeal to him to eat and walk and use the puffers etc. It seems foolish to put one's body through chemo and radiation and not follow the orders and risk sabotaging the desired outcome. 

I do appreciate the tips, we have a Hepa air filter in his office which we can wheel into the bedroom.  I also put on a diffuser for some moisture with eucalyptus when the air conditioning was on 24h.

This is an incredibly stressful time so I thank you all for being here and taking valuable time to support and encourage everyone. With sincere appreciation, Jeng

[Judy M2]

Well, you can only do so much. It's rough on caregivers, especially with an uncooperative patient. I never coughed like that but my husband stayed close by throughout my treatment and aftermath. I will say that my coughing subsided after a couple weeks of chemo and radiation, so hopefully his will too. 

[Steff]

BJeng,

As someone who spent 5 1/2 years caring for my mom, my suggestion is to do what you gotta do.  I gave everything I had to my mom and I believe that it helped her with her lung cancer treatment journey.  However, I could not be with her 24/7, nor can you for the long term.  Things have to get done outside of the home.  To solve my concern with leaving my mom, I invested in a few security cameras so I could keep an eye on her.  We both felt so much better knowing that I could regularly drop in and check if she was okay.  The cameras also have microphones so I could ask if she was okay (if she wasn't picking up the phone).  

While my mom was being treated for leukemia, we had to be very vigilant about any type of germ.  So instead of going into grocery stores, I did grocery pick up (that also limited the time I was away from her).  She switched to a pharmacy with a drive thru and we limited our contact with people outside the home.  The good news is, this doesn't have to be forever.  Your husband will likely not need to be hypervigilant about germs and infections for the long term.  

I hope this helps a bit.

Take Care,

Steff