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Worsening Cough


JCM

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I am a stage IV patient with an unrelenting cough that has not eased or been explained by my medical team since I was diagnosed in March 2018. I have had chemoradiation and then surgery to remove my right upper lobe and part of my middle lobe. Immediately following surgery, new pulmonary nodules were seen on the right side and left pulmonary nodules remained stable or mildly increased. They were too small to be biopsied or seen on a PET until they reached 9mm. There is now widespread cancer in both lungs. I am being treated with carboplatin/alimpta/Keytruda even though my PD-L1 levels are less than 1%. I also have a pleural fluid metastasis on the right side. My team does not feel the fluid is large enough to be causing the coughing I am having. I have seen a pulmonologist and he has me on the inhaler Symbicort. For the gut wrenching cough that has me keeled over I use cough syrup with codeine every 3 hours. It is the only thing that works. My back is the only area where I feel pain and it’s pretty minimal. No one can explain the cough.

Has anyone had experience or known someone for whom the cough ultimately explained itself? There is currently no PET evidence of metastasis in brain or bones, but as we all know, it doesn’t mean the sneaky cancer cells are not there. But isn’t there a possibility that the cough is in and of itself a tumor in the back that could be pressing on nerves of the spine that could eventually be expressed that way? Overall, I’m wonderful if any of you have the mystery of a long term cough that can’t be related to anything specific unless or until it implodes in some way? I don’t know if I am explaining myself at all. I’m struggling to find answers and I know there is a wealth of experience out there!

Thank you....Jane

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Hi Jane,

First of all I’m so sorry you’re having to go through all of this. You must be exhausted from the three hour dosing schedule of cough meds.  
 

Here’s my best guess- the Keytruda could be causing a worsening cough. I had one dose of the triplet and even though I thought it wasn’t possible my cough worsened after the Keytruda.  
 

Coughing was listed as a known side effect in my chemo education packet.  I’m not sure there’s much that can be done however keep pushing the medical team....

 

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Jane,

I can explain my tendency to cough and perhaps this might give insight into your coughing. I'll also tell you what works for me to ease my coughing.

Almost 16 years ago, after diagnosis with Stage IIIB NSC Squamous cell Lung Cancer, I had pre surgical chemoradiation to shrink a large tumor in my right main stem bronchus. Then I had surgery to remove my right lung and after surgery, a number of followup surgeries to remedy a fistula (leak) in my airway. After a years worth of surgeries, I experienced a recurrence of tumors in my left (remaining) lung. Then followed 12 infusions of taxol and carboplatin and stereotactic radiation to zap the persistent tumors in my left lung.

During all this treatment, I was plague with coughing and unfortunately I am still bothered by coughing. My doctors suggest the cause is sensitive tissue in my airway associated with surgical scars and the nature of my coughing seems to validate that finding. It is important to realize that long tenured survivors of surgery and extensive chemoradiation are rare. Our population is so small that there have never been studies to determine the causes and remedies for post treatment coughing. So my doctors suggest irritation and a hypersensitive airway may be the causes but no one knows for sure. During the pollen season, I experience lung congestion and coughing and suspect the pollen and other pollutants in the air are the cause.  Here are my remedies:

  • I use albuterol with a nebulizer as much as three times a day during periods of congestion and coughing,
  • I use two types of inhalers daily Advair in the morning and evening and Spivira in the morning,
  • During bad periods, I sit in a steam shower to break up congestion and to make coughing productive and easier,
  • I stay indoors when pollen and air pollutants are high, and
  • I avoid second hand smoke, outdoor barbecue smoke and other smoke sources (burning leaves, fire places, vaping and etc).  These all cause irritation and result in near constant coughing.

I wish I could report that my coughing has been controlled. It is only mitigated and it recurs frequently enough to be a major pain.  I hope some of these techniques help your symptoms.

Stay the course.

Tom

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