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Jenny Steel

New Diagnosis -- Please if anyone can help with symptoms

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Husband Brian was diagnosed on January 7 2020 with metastatic pulmonary adenocarcinoma -- came out of nowhere.   He has a pleural effusion on his left lung which has been drained twice.  We're trying to cope with the symptoms (short of breath, nausea, cough, tiredness, insomnia)  pending a biopsy next Wednesday for molecular testing and then a  treatment plan.  That plan is likely two to three weeks away.    The last couple of days his cough worsened and today  he says his diaphragm is spasming.  On Friday he was prescribed codeine for the cough but it hasn't seemed  to help yet.  He can't sleep and is really in distress -- he can't speak without coughing and the cough seems worse.  We figured his pleural effusion needed another drain so went to Emergency this afternoon.  The X-ray though showed that the effusion is really not that big.  He was prescribed 1mg Ativan at the ER to try to relax his muscles. 

Is there anyone that can help us through this very scary time?   Does it take time for the Codeine/Ativan to kick in?  Is there anything else we can do?   

I'm so scared that he won't make it through to treatment.....

Thanks

Jenny

 

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Jenny,

Very sorry to learn of your husband’s diagnosis and of his coughing symptoms. During treatment and the pollen season, I have spasmodic and troubling coughing. Irritation of my airway is the cause and the remedy is to isolate from the irritation. To stop the spasms, I take lengthy steam showers. The steam soothes my airway and helps relieving congestion by breaking up secretions. When congested, I take Mucinex (600 mg, am&pm). I also have a prescription for albuterol and a Nebulizer to augment the steam. Hope this helps.  

Stay the course. 

Tom

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Hi Jenny,

Welcome. I’m sorry to hear about your husband and that you find yourself writing the unthinkable.  You’ve come to the right place, we’ve all been there and each of us has a tool kit to get through this early diagnostic process with that persistent cough.  For me I had to change the frequency of the codeine from every 12 hours to every 4 hours.  The shorter acting version worked “better”.  

We also got a wedge memory foam pillow from Amazing to keep my head elevated at night. I didn’t sleep well either. We tried Melatonin too.  Hot steamy showers helped as did a little bit of Albuteral inhaler.  I lived on honey cough drops, drank lots of green tea. I avoided black pepper as that seemed to trigger coughing fits. 
Have hubby wrap a small pillow around his rib cage when the coughing fits start up.  This will protect his ribs.  

I had to stop trying to talk and my husband gave me a writing pad. I didn’t do any phone calls and rested as best as I could whenever I could.  
 

Once the biomarker testing comes in and the treatment gets underway, the cough will go away.  I’m taking oral targeted therapy and the cough stopped after one dose.

Please stay in close contact with the medical team and do not settle. Persistence pays off.  Hang in there and let us know how you’re doing.  I hope he finds some relief soon.

Michelle

 

 

 

 

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Jenny,

I still struggle with sleeping having acquired chronic pain from a multitude of treatments. 

Here are the changes we’ve made over the years to sleep. Most important was the purchase of an electric adjustable bed and high density foam mattress. One chronic pain site is incision scars and elevation transfers some upper body weight to my hips. This is a big help. 

I also take Xanax as a sleep aid, generally 0.5 mg. Sometime I take 1 mg and very occasionally 1.5 mg. I take it about 30 minutes before bed and it works say 6 out of 10 nights. When it doesn’t work, I try reading something dense and boring. 

My GP prescribed Xanax after we cycled through Ambien and Lunesta. The former made me sleep walk and the latter put me in the emergency room with anaphylactic shock. 

Most important is realization and acceptance that I won’t sleep some nights. It is a price I pay for surviving lung cancer. Acceptance didn’t happen overnight. Of all the survival trials I face, sleeping is my hardest challenge. 

I have scripts for narcotic pain meds. I use them sparingly when my symptoms gang up, but I’ve found narcotics might knock me out but don’t produce a restful sleep, and I’ll need to deal with constipation and a narcotic hangover that ruins the next several days. 

I limit myself to one cup of coffee in the morning and no caffeine the rest of the day. I use wax earplugs to shut out noise transients and keep the bedroom temperature on the cold side. We use a light weight down duvet which provides warmth without weight and because one troubling chronic pain site is “taxol toes”, I wear wool lined leather moccasins to isolate my burning and painful toes from the weight of bedding. 

I also avoid napping during the day. At the most, I’ll experience 2 back-to-back sleepless nights. Then, I power through the next day and go to bed early the next evening. Often, that catch-up sleep duration might be 10 hours. 

Stay the course. 

Tom

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Hi Jenny,

Unfortunately, sleep aides weren’t effective for me as the coughing was caused by bronco spasms.  All the normal sleep hygiene rules were tossed when I had plural effusion. I slept whenever I could in two hour increments. The best sleep I got was after the 2am dose of opiate cough syrup.  
We bought a high quality sound machine, room darkening shades, and covered all the ambient light from anything with black electrical tape.  

Try and keep activity to a bare minimum, especially stairs.  One of the nurses recommended some deep breathing exercises to help the lungs called 4-7-8.  You can find this on YouTube by Dr Andrew Weil.   While this technique helps heal the pleura it also triggers a parasympathetic response to help with sleep.  
 

Michelle
 

 

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Jenny,

I'm sorry to hear about the troubles your husband is having.  My mom had to have fluid drained from her lung several times during her most recent bout of lung cancer.  What we learned through this process is that the ER is not the best place to decide how much fluid is too much.  If your husband is having trouble breathing due to the fluid build up, he should probably have it drained.  Is he involved with a pulmonologist yet? Or are you able to get with the doc who drained the fluid to ask if he can get it drained again?  My mom's pulmonologist began removing fluid from my mom's lung as a simple outpatient procedure.  This was happening every few weeks and they discussed inserting a temporary drain to keep the fluid drained, but the issue eventually got resolved prior to the drain being inserted.  My mom would feel short of breath even with a small amount of fluid build up.  Everyone is different, but if your husband is struggling, I would push to get it drained again and maybe look into having a drain temporarily inserted to provide continuous relief.  

Another big help for my mom, like Michelle said, was the wedge pillow.  My mom now has an adjustable bed and even 4 years after initial diagnosis, she still sleeps on a slight incline.  You can get them online or at your local medical store.

Finally, I understand your fear of your husband's current struggle and the impending cancer treatment.  With my mom's most recent lung cancer battle, there was a time that I thought we would have to quit treatment completely - this was 2 months after starting chemo and immunotherapy.  My mom was hospitalized for nearly 2 weeks with pleural effusion that ended up being a complication from pneumonia and having inflection throughout her body.  It was a really tough time and I felt helpless because there was nothing I could do to help.  But with her doctor's care, medications, and her will to fight, she made it through and continued on with treatment.  So, there is HOPE - everyone on this forum is the epitome of HOPE.  Your husband has a tough journey ahead, but with the recent advances in lung cancer treatment and care, there is HOPE for him as well.

Please know we are here for you. There will be lots of questions along the way, please feel free to use us as a resource.

Take Care,

Steff

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