Need advice: Does anyone have COPD and throat cancer?

lilmizmoore

m y 65yo boyfriend has had COPD for several years and it was managed well. Two months ago after some suspicious symptoms, he was diagnosed with stage 3 throat cancer. Last week, he began chemo 1x/week of cisplatin for 6-7 weeks, and radiation 5x/week for 6 weeks.

Two weeks ago he had his port put in. About 4 days later his feet started to swell. They are so huge that he cannot wear shoes at all. The docs sent him for an ultrasound of his legs thinking he had blood clots. Nothing. Did an EKG: nothing. Put him on 20mg of lasix once a day: nothing. The oncologist suggested he see a cardiologist. We are still waiting to get a callback for an appt.

He has always had a tough time coughing because he doesnt have the strength to get the gunk up all the time (sorry if TMI). Since he has started cancer treatment the mucus has gotten very thick (clear to white) and it is so thick that he almost chokes on it. I'm not sure what to do when this is happening, as it is very frightening to watch him struggle to breathe. It cuts off his airway so I have to beat on his back and it seems to help.

Are there any head/neck cancer patients here that also have COPD? I really need some advice here as I am at a loss as to how to proceed. Thank you!

wbcgaruss

Hello lil and welcome to the CSN H&N forum.

I do not have COPD but had throat cancer back in 2012/2013.

I went through the 35 radiation treatments with chemo included.

The thick saliva is what everybody gets when going through this radiation process. I don't know how long he has been in treatment or how many weeks of rads he has had but this usually shows up after radiation has been ongoing for a bit.

In a worst-case scenario, and it may be worse for him with COPD you can get a suction machine to suction the thick saliva, talk to your care team about whether he should have one.

Most of us manage to get through just rinsing with a solution of salt and baking soda. And the worse the saliva is the more often you have to rinse. I think when I was at my worst I was rinsing every 20-30 minutes at times. You just have to keep it cleared out and stay ahead of it. Getting it out however you can and rinsing with the solution often, it makes your mouth feel a bit better too. This is brutal tough treatment stay strong and just get a mindset to keep going.

As far as sleeping I recommend a recliner so he can lie down as much as is comfortable or even sleep practically sitting up. You don't want to lay in bed with this thickening saliva. Laying down makes it tend to go towards the throat and the idea is when it forms to get it out and stay ahead of it. If you don't have a recliner you will have to prop up somehow a bit to sleep but not laying down. Even on a recliner I had a couple of episodes where I woke up and my air was cut off from the thick saliva and I had a heck of a time clearing it. it does make you choke.

I don't know what's up with his feet swelling but if he is getting chemo and other drugs during this it can have some adverse effects on the body and in this treatment you go through a lot.

I am posting the recipe for the salt and baking soda mouth rinse below just mix it up at home very cheap t use and does the trick in this situation. Just stay ahead of it.

Here Are Recipes

For the salt/baking soda mixes.

Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

The trick is to stay ahead of it as best you can.

There are no easy solutions but this will eventually quit.

You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

Laying down directs it to the back of your mouth/throat area.

Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

Wishing You The Best-Take Care-God Bless-Russ

Mouth Rinse Recipes to Use During Chemotherapy

Soda and Salt Mouth Rinse

1/4 teaspoon baking soda

1/8 teaspoon salt

1 cup of warm water

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

Soda Mouth Rinse: A Good Rinse for Before You Eat

1 teaspoon baking soda

1 cup of warm water

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

Saltwater Mouth Rinse

1/4 teaspoon salt

1 cup of warm water

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

Salt and Soda Rinse for Gummy Mouth

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

1/2 teaspoon salt

2 tablespoons baking soda

4 cups of warm water

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

Peroxide Rinse for Crusted Sores

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

1 cup hydrogen peroxide

1 cup water or

1 cup salt water (1 teaspoon of salt in 4 cups of water)

If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

Use a non-peroxide rinse for two days, before returning to this mixture.

And Hold On-I hope this helps.

Take Care God Bless-Russ

https://www.youtube.com/watch?v=3fwYG32g5mo

lilmizmoore

THANK YOU SO MUCH FOR THIS VALUABLE INFORMATION! I will certainly be sharing this with him (Fred). He presently sleeps in a recliner due to the COPD. He is at his worst right after he wakes up. He coughs and hacks, coughs some more. This goes on for an hour or more sometimes. Then, he's fine.

He just began treatment last week. 2nd chemo is tomorrow. The swollen feet is a mystery. I thought it was due to the prednisone he was given for a few days after he had the port put in. Oncologist wants him to see a cardiologist so we are waiting for that appt.

I sincerely appreciate your input on all of this :)

wbcgaruss

Lil you are more than welcome and I hope it helps.

Lil since he just started treatment I don't think the thick saliva is a result of his treatment yet. That usually starts 3 or 4 weeks in or later. So I am not sure on that. Just to let you know this is tough treatment. He can do it but be prepared for some difficult moments and stay strong and push through week to week, day to day, hour to hour, minute to minute, whatever it takes. I tell you this to prepare you not to scare or upset you. I am going to post below an account of an individual who went through this treatment and he lists his experience each week. Your results will vary but it gives you an idea.

Take care, God Bless-Russ

Example Of One Person’s Effects And Experience With Head And Neck Treatment

(From a support board similar to ours with a link to that discussion)

 

I had 7 weeks of radiation, and three infusions of high-dose cisplatin. (The chemo requiring an overnight hospital stay - except for the last dose, which they fractionated because they were worried about permanent hearing damage).

 

On that, yes, I'm still getting tinnitis. It's intermittent and was much worse directly after the chemo - but it's still there .. I don't know if it will go away fully or not, but I hope so. (If not, small price to pay to fight the cancer).

 

I never lost my voice, but when the mucositis was at it's worst, talking was sometimes difficult - just because of the thick mucous accumulating in my mouth and the need to spit .. so I would sometimes sound like a cartoon supervillian or someone with some kind of speech impediment as I talk/gargled through a thick layer of yuck.

 

(And yeah, I used flat mineral water and every other thing the internet suggests, including a concoction of magic mouthwash - which has viscous lidocaine (for numbing), sucralfate (for a barrier), antihistamine (to reduce phlegm) and other bits and bobs all mixed up by a compound chemist. You could google it for a try, as it was OK ... from my research the best mucositis treatments are new patent medicines available in the USA, and I think maybe just now starting to distribute into Australia .. google medicines like "Gelclair", which advertise symptomatic (and prophylactic) relief of mucositis. I couldnt get my hands on any in time to help me.

 

I stopped eating around week 4-5 of treatment, mostly because of the rancid taste dysgeusia. Everything in my mouth tasted contaminated. (A side effect of the chemo).

 

It's gone now, and I am able to take everything I need by mouth - but no solids .. just hydration and the formula that I'd otherwise put into the PEG I can drink by mouth now (so I'll look at getting the PEG removed in the next couple of weeks).

 

Yes, I still have a sometime sore throat. Basically, the radiation damage you suffer over the course of treatment is .. well it's just a horrible insult to your body. It's worse than a normal wound or injury, because the treatment actively attacks the stem cells (which normaly help you heal), so the wounds can be severe and slow to heal. But my pain is very manageable now .. just 2 panadol today. It was at it's worst the first 2 weeks after treatment.

 

When you finish the course of radiation - yes, the interior and external radiation damage can be a problem (who knows, you might get lucky, don't expect the worst). It's great to no longer have to go into hospital every day - just be ready for the possibility that you might be debilitated at that point, and be prepared that you might need 2 solid weeks of pretty-much bed-rest and just ticking away time, before you start to heal and feel better.

 

For me, it went something like this, over the span of treatment:

 

Week 1: first round chemo & 5 rads (felt fine, some nausea from chemo)

Week 2: (5 rads) minor tinnitis onset from chemo, some vomitting, radition fine

Week 3: (5 rads) tinnitus fading, feeling quite good, no issue with rads some reduction in taste

Week 4: (5 rads, chemo) start to notice mucous problems, no burns yet, more serious nausea and vomitting from chemo

Week 5: (5 rads) noticable exterior burns and sore, stretched skin, mucositis more severe, notice rancid taste to everything in mouth - can no longer eat or drink, become PEG reliant

Week 6: (5 rads) mucositis worsening, always have to carry spit bag, burns need intrasite gel and daily dressing, relying on panadol / neurofin but pain increasing

Week 7: (5 rads + chemo) mucositis debilitating, need to gag up mucous constantly, accidentally swallowing any precipitates a need to vomit, exterior neck burns are moderate and need dressings and intrasite gel, doctor escalates pain management to endone / morphine

Week 8: (first week post treatment) awful awful suffering, vomitting, spitting up blood, constipation, bloating, night cramps in legs, mucositis severe, pain moderate to severe, wounds still require intrasite and dressing for a few days

Week 9: (second week post treatment): exterior burns healing nicely, no longer require dressings, just moo goo (healing moisturising cream). Pain lessening, but mucositis still awful, nigh cramps in legs

Week 10: (third week post): exterior burns gone, pain better, mucositis still bad, but feels a little bit better, able to sleep for more than an hour or two at a time thanks to improving mucous, night cramps gone after taking daily vitamin & zinc

Week 11: (fourth week post): turned a corner with mucositis, now still have to spit during day and night, but it's a fraction of what it was. Experimenting with foods but can't viably swallow them due to gross mucous - but start tentatively to sip drinks .. still mostly PEG reliant

Week 12: (fifth post): mucositis backing off more, can now take most nutrition and hydration via mouth and thinking of getting rid of PEG. Pain is manageable, dont require anything more than panadol. Can't yet eat solid foods, although taste appears to have returned to at least 50% of pre-cancer levels

 

SO ... that should give a pretty fair idea of how things have been for me .. you might get better (or worse) luck with side effects, but hopefully it gives a little perspective. Knowing what to expect has been really tough, and it's easy to get into this habit of scouring Doctor Google almost daily .. I think in the post-treatment phase the most important thing is to take it easy and not expect too much from yourself. Your body has been subjected to a major attack, give yourself time to rest and heal, and if you need help make sure you ask for it.

 

Oh yeah .. and on kids .. no, they have no idea, just "dad's been a little sick" 

Link to this forum and discussion--

https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Your-experience-with-side-effects-from-head-amp-neck-cancer/td-p/25626/page/2