Symptom management. Help please?

[DotingDaughter1]

Quick background, my Dad was diagnosed last month with stage 4 lung cancer. As I'm sure you all know, it was a shock. No history of smoking. No familial history of cancer. 

It started as a mild cough back in March of this year and has progressed to relentless coughing fits and SOB. It took 5 months for doctors to figure out what was going on. He's been losing weight due to loss of appetite and has yet to start treatments thanks to the insurance taking its sweet time to approve chemo.

He's been given an inhaler to use every 6 hours and guaifenesin-codeine syrup to aleviate the cough but really aren't doing much to help him (particularly the syrup doesn't relieve the cough). I desperately want to help him just breathe easy and get a good nights sleep, but I don't know what else can be done.

My Mom has taken role as caregiver and has bought Hepa filters, teas, cough drops, vicks, vaporizer, humidifier, neck massager, therapedic neck pillow, basically everything under the sun. She has already eliminated using cleaning supplies with strong scents and tries cooking outside on the grill instead of inside when possible to avoid aggravating my Dad's cough. She massages his esophagus lightly and that seems to help him rest. (Dad feels like there something in his throat that provokes the cough thus all the neck and throat stuff)

Any advice? Please? I don't want my Mom to get burned out, and I don't want my Dad to give up before the fight has even started. I feel so useless and I'm trying my best to stay strong for them but pregnancy hormones don't help the already emotional. 

[Judy M2]

It took months to get my Stage IIIB diagnosis too after being mis-diagnosed twice. The time waiting for test results, particularly biomarker testing, and treatment can be interminable, especially with such a high symptom burden. Your mom seems to be doing all the right things. Has she spoken to your dad's pulmonologist? I'm wondering whether nebulizer treatments like they do for COPD patients might help.

She might want to get some Ensure for easy calories. Sooner or later, that can be the main source of nutrition. 

I hope you can all hang in there. This disease is a marathon and there are ups and downs along the journey. But you all have a wonderful new addition to motivate and look forward to. Congratulations to you and take care of yourself. 

P. S. It occurs to me that morphine may be helpful to calm your dad's coughing. Hospice prescribes it for uncontrollable coughing and air hunger. A palliative care doctor can prescribe morphine if it's suitable for your dad. I always recommend a palliative care doctor anyway to help with treatment side effects. 

[Steff]

Hi Doting Daughter.  My mom had an uncontrollable cough too.  It was due to a tracheal stent she had placed at the start of her 2nd lung cancer battle.  The only thing that helped were Tessalon Perles.  They were a prescription from her doctor.  My mom was only able to use it periodically because it did such a good job stopping the cough that she was no longer coughing up the junk out of her lungs like she needed to.  So she mainly stuck to taking them at night, which helped tremendously with her sleep.  I would definitely suggest talking to his doc about getting a prescription.

Take Care,

Steff

[Rower Michelle]

Hello from me as well. 

Unfortunately your father's story is a familiar one to many of us.  It was four months of progressively worse coughing with multiple diagnoses before I was finally diagnosed.  The cough was unrelenting for me until treatment started.   I had one dose of targeted therapy (pills) and it went away immediately.   Many of these treatments are very effective so there is hope on the horizon.  

Your Mom is already doing everything possible, the only other strategy we tried was to stop talking.  My husband and I used a memo pad to communicate, that helped along with very hot steamy showers.    It does sound like your Dad could benefit from a new prescription, I went through a few before I found one that helped take the edge off that cough.  It was a short acting opiate administered every four hours like clockwork.   

Hang in there, 

Michelle

[DotingDaughter1]

Thank you so much for the replies. This makes me feel better. I feel I've come to the correct place for advice💙. I do apologize for any duplicate posts. I'm barely getting the hang of being on a chat forum and was not sure I had even registered correctly.  I'll be sure to have Dad ask for a new script

[BridgetO]

HI DD and welcome her! You didn't mention whether your dad has had biomarker testing. This is important in developing a treatment plan, especially so in more advanced lung cancers.  Keep posting and ask us whatever questions you have. Somebody here will probably have an answer. All the best to you and your family.

[DotingDaughter1]

Ill be sure to ask. Since this is all fairly recent and I unfortunately am not accompanying him to his visits. Aside from the xrays, CTs, ultrasounds, biopsy, and PET scan I really am not sure what other exams have been performed. It's just scary to be told its stage 4 lung cancer and he needs to start chemo and immunotherapy as soon as the insurance approves. It's a shock and we wonder how we never knew before. Why he never had symptoms prior to when he did?...

[LexieCat]

2 minutes ago, DotingDaughter1 said:

Why he never had symptoms prior to when he did?...

That's one of the reasons lung cancer is so deadly--most people have no symptoms till it is far advanced. If it weren't for screening, I never would have known I had lung cancer when I was first diagnosed. And when it recurred, and I was Stage IV, I still would not have known but for the CT scans I was getting on a regular basis.

Most people whose cancers are found early either discovered it as a result of lung cancer screening or because they were getting imaging for some other reason and the tumor was an incidental finding. Unfortunately, it remains largely a matter of luck.

[LouT]

Hi DotingDaughter1,

So sorry to hear about your father.  You've got some great advice already so I'm only going to suggest two things for you.  Both are favorites of mine for "first-timers" and caregivers...

The first is "10 Steps to Surviving Lung Cancer; by a Survivor" and that can be found here. 

The second is our Caregivers Resource Center and you can find it at this location.

Best of luck to your dad and your family we'll be here as you need us.

Lou

[DotingDaughter1]

We came upon Enterade AO supportive care hydration. From what I see it's like gatorade without sugar. Electrolytes, amini acids, and stevia as the sweetener. Apparently it's supposed to help GI issues after chemo. Any personal reviews on this?

[LexieCat]

I'd suggest asking the oncologist. They often have pretty definite opinions about what kind of supplements to use. 

And I had next to zero GI issues due to chemo. They infuse anti-nausea meds with the chemo and prescribe pills (typically Zofran and/or Compazine) to deal with any bouts of nausea afterward. The only trouble I had was when I was taking the anti-nausea meds on a regular schedule, without waiting to feel nauseous. It caused the worst constipation I had in my life! The nurses set me straight and told me to wait till I started to feel queasy to take anything. As it turned out, it was rare for me to need more than one or two (at most) doses per cycle. Not once when I was on chemo did I ever throw up. 

It IS important to stay hydrated, but drinking plenty of water is probably sufficient. You need to flush out the chemo and not drinking enough water can cause serious kidney problems. 

Doesn't hurt to be prepared, but it might not be as rough as you're anticipating.

[DotingDaughter1]

Since you all have been very helpful and supportive I just wanted to give you guys a quick update! Dad will he starting chemo this Wednesday! 

[LexieCat]

Great news--do you know what drugs he will be getting?

[DotingDaughter1]

Unfortunately I do not. 2 types of chemo and immunotherapy were given but I'm not aware of the names. Thankfully no side effects as of yet. He was also given 3-5 days of steroids which helped some with his cough. He's hanging in tough which allows us all to be much more optimistic. 

[LexieCat]

The combo a lot of us receive/d we call the "triplet"--Carboplatin, Alimta (Pemetrexed), and Keytruda (Pembrolizumab). If that's what he's getting, there's a good chance his side effects will be minor/manageable. I used to get hit with horrible fatigue about day four of each cycle, but most of that would disappear over the next couple of days. The other effect that bothered me was "brain fog"--difficulty concentrating. That affected my ability to work (intense legal job) but otherwise wasn't too bad.

Hopefully he has a similarly easy time of it. Glad he's getting some relief from the cough.