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EGFR mutation exon 19


Kenn

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hello-- my close friend 40 yrs old was just diagnosed with this form of lung cancer several weeks ago..healthy up to last couple of months, developed a terrible cough- ER visits and tests- now he has been seeing an oncologist and has been on a once a day chemo pill for 2 wks.

His friends and family are all new to this terrible disease and we are all still in a surreal shock. But day-to-day, step by step learning.

Big concern right now is that he coughs so bad that he falls down- and he has blacked out a couple of times-- will be seeing the oncologist again in the next few days. Has anyone else had this issue?

Pardon my ignorance- maybe this is normal for a lung cancer patient. thanks for your input.    K.

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Kenn,

Coughing is not abnormal with lung cancer, but coughing so hard to cause blackout and falls is quite concerning.  Hopefully the oncologist can provide some ideas as to why the cough is persisting and how to remedy it.  My mom takes mucinex daily otherwise she coughs pretty consistently. She also was using some prescription cough suppressants...I don't know the official name, but the oncologist called them "pearls".  

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Kenn,

Coughing and lung cancer, is there a relationship?  Unfortunately, yes there is.

If the tumor is located in or near a main stem bronchus or near the esophagus, then it could be and irritant and the natural impulse is to cough to expel the irritant.  From your description, your friend is pretty far down the typing and staging process, already biopsied and apparently under oncology treatment. As for the forthcoming oncology consultation, here is what I'd do:

  • Reveal extent and effect of coughing
  • Inquire about palliative radiation to shrink the tumor (tumors) and ease the symptom
  • Obtain strong, narcotic based, cough syrup.

No pardon required.  This place is for questions.  Hope your friends forthcoming consultation goes well.

Stay the course.

Tom

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my 40 yr old friend has coughed so bad he blacks out..his family has been with him almost constantly. But there was an hour he was alone, and he fainted and hit his head- goose-egg..so today he is back in the hospital with a couple of CT scans, looks ok. All his cancer treatment issues are just beginning, so we all are praying things will settle into a new "norm" soon, he is miserably uncomfortable in many ways. Oh..another issue is that he cannot take any narcotics. no morphine, opioids, has reactions.

Wow, getting a new respect for so many people who deal with hard things.

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te  I think the "pearls" that Steff referred to are benzonate. A brand name is Tessalon Perles. It is a cough supressant that isn't an opiate. It worked pretty well for me when I had brocnchitis not long after my lobectomy. I did have uncontolled coughing till I felt like I was going to throw up but never did and certainly never passed out. Kenn, I hope your friend's medical team can find some solution for his cough.

Bridget O

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my friend had to have fluid drained from around his lungs and also from around his heart, all this morning. Required both a pulmonologist and a cardiologist..they got 3 liters of fluid from around his lungs and another liter from around his heart. He has been on the chemo pill for about 2 wks, has been in a lot of pain and can't take any narcotics. The docs today inserted a drain tube,  for lung fluid draining. 

He was prescribed the Tessalon Perles for cough, but it didn't ease anything.

 

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Kenn,

Hopefully your friend will feel a bit better with all of the fluid drained????  Does he have pneumonia too?  I am mainly asking because increased fluid around my mom's lung is usually an indicator of pneumonia.  I'm sure if he's in the hospital, they have checked for it.  Glad to hear he got the perles - I can't remember if it took a few doses to start helping or not.  My mom's main reason for non-stop cough is an airway stent.  She would sound like she needed to cough something up, but never could.  The thing that worked best for her, along with the perles was called Mucomist (it smells like rotten eggs) and it is administered through a nebulizer.  My mom used it for 2 weeks while in the hospital and then for a short time after her release.  I'm not sure it is for all types of coughs, but it may be worth checking into.  

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thank you Steff.  They say he doesn't have pneumonia any more. But today the heart dr and lung dr agreed that he needed more help in keeping the fluid away from his lung area and around the heart- so next week they are doing a procedure to place a tube with a camera inside so they can monitor the fluid buildup.  And some kind of powder will be applied (?) to keep the fluid from sticking inside his lung, it was collapsing...  I am getting this all secondhand from the family,  so I am sure all of these actions have names but I just don't know them myself.

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he was able to take dilaudid and it is helping. Oncologist said the Tarceva is already starting to shrink the lung tumor. 

He has been shunted to 2 diff local hospitals for procedures, each move is hard. Would like so bad to get him to a specialized cancer hospital, thinking of Moffit in Tampa. Not my decision but that is my two cents' worth.

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:? The docs did a procedure this am, to place another tube with camera to monitor fluid buildup around his heart and lungs. he already has a tube/shunt placed in there from last week.

While they were doing this procedure, they found several more tumors on the lung wall, sent them to be biopsied.

This is where we (not family but friends) would surely like to see him at a cancer hospital/center instead of a general type hospital. But again, just our 2 cents worth.

thanks for letting me vent!

Kenn/Sue

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