Looking for some help

Christine135
Christine135 Member Posts: 71
in Lung Cancer #1

I am on the esophageal board as my husband Mike was diagnosed in April of this year with re-occuring Stage 4 cancer in his esophagus. A short over view of our story is Mike started to have food get stuck in his esophagus so on April 5, 2012, a day before his 57th birthday, he had an endoscopy which revealed he had a tumor at the base of his esophagus where it met his stomach. He endured chemo and radiaton and on August 21, 2012, he endured a 9.5 hour surgery to remove his entire esopahgus and pull up his stomach to make the new esophagus. After 8 long months of rehab, he was ready to go back to work one day a week. He had a routine visit with his cardiologist who took him off his heart meds that he was on after surgery for heart pulpatations and within 36 hours, Mike took a turn for the worse. He lost a lot of weight (he is now down to 113) after being around 120 and he can not get enough air into his lungs. He struggles to breath when he walks but when doctors test his oxygen intake through the finger sensor, he registers in the high 90's even though his last pulmonary test two weeks ago confirmed that his lung compacity is down 50% since last year. Doctors will not put him on oxygen because his O2 registers so high. He started chemo, Folfox 5 a month ago, scheduled to go every other week and only had one treatment which took him 10 days to recover from. Could not do the second round because food was stuck so we had to have an endoscopy done and today when we went for chemo, his Oncologist cancelled it because his breathing is too bad. They actually said he had Restrictive Pulmonary Disease but they have no idea what is causing his breathing issues. They do not know if the cancer is in his lungs, if it is COPD, scar tissue from surgery..all we know that within 36 hours he struggles for air.

So, I was wondering if anyone has any thoughts about what is happening to Mike and if his symptoms of not being able to get enough air into his lungs but his O2 tests register in the high 90's may have happened to anyone here and if this these are symptoms of lung cancer.

Thank you so much.

Christine 

Comments

  • dennycee
    dennycee Member Posts: 857 Member
    #2
    If he was a lung cancer patient..

    ..they should take an X-ray and look for a pleural or pericardial effusion; or a pulmonary embolism.  do you know if they looked for these?  Labored breathing can happen as a result of several things.  If they didnt rule those out he should go to the ER right away.  

  • Christine135
    Christine135 Member Posts: 71
    #3
    dennycee said:

    If he was a lung cancer patient..

    ..they should take an X-ray and look for a pleural or pericardial effusion; or a pulmonary embolism.  do you know if they looked for these?  Labored breathing can happen as a result of several things.  If they didnt rule those out he should go to the ER right away.  

    Hi dennycee

    We just had another CT scan done this morning and we are waiting for the results. They ruled out plural effusion and embolism last month when we did a CT scan so we are waiting for the results of today's scan. There is nothing ER can do for we are running all the tests they would and though he is having difficult breathing, he is not in dire distress. Oxygen will do not good for his O2 stats are in the high 90's and oxygen only works when oxygen saturation is 88 or below. We just keep testing but have no answers.

    Thanks for your response,  

  • dennycee
    dennycee Member Posts: 857 Member
    #4
    Christine135 said:

    Hi dennycee

    We just had another CT scan done this morning and we are waiting for the results. They ruled out plural effusion and embolism last month when we did a CT scan so we are waiting for the results of today's scan. There is nothing ER can do for we are running all the tests they would and though he is having difficult breathing, he is not in dire distress. Oxygen will do not good for his O2 stats are in the high 90's and oxygen only works when oxygen saturation is 88 or below. We just keep testing but have no answers.

    Thanks for your response,  

    Glad they ruled those out.

    I hoped they would have checked those by now.  The lungs are an amazing organ.  My left one barely pushes air, the lower lobe has been nuked into a useless mess and the top is partially collapsed and the pleura is mostly loculated so it barely expands or contracts at all.  There is some scarring on the right lung where the mets were.  And yet....my po2 level is usually between 96-99.  

  • Christine135
    Christine135 Member Posts: 71
    #5
    dennycee said:

    Glad they ruled those out.

    I hoped they would have checked those by now.  The lungs are an amazing organ.  My left one barely pushes air, the lower lobe has been nuked into a useless mess and the top is partially collapsed and the pleura is mostly loculated so it barely expands or contracts at all.  There is some scarring on the right lung where the mets were.  And yet....my po2 level is usually between 96-99.  

    Hi dennycee

    The CT scan showed some air in Mike's chest so we are scheduled to see a new pulmonary doctor at the hospital we normally go to as this pulmonary doctor is at a different hospital and does not know Mike's complete history with the cancer. The doctor did say that he did not believe this was the entire root of Mike's breathing issues but it does contribute to them so now we will see what the new pulmonary doctor says. There is talk of putting in a chest tube tube to drain the air but I am not so sure he can withstand a surgical procedure unless it is done on an out patient basis. Chemo has been cancelled until further notice until we can figure out what is going on with the breathing.

    Thanks for your feedback..I truly  appreciate it.  

  • dennycee
    dennycee Member Posts: 857 Member
    #6
    Christine135 said:

    Hi dennycee

    The CT scan showed some air in Mike's chest so we are scheduled to see a new pulmonary doctor at the hospital we normally go to as this pulmonary doctor is at a different hospital and does not know Mike's complete history with the cancer. The doctor did say that he did not believe this was the entire root of Mike's breathing issues but it does contribute to them so now we will see what the new pulmonary doctor says. There is talk of putting in a chest tube tube to drain the air but I am not so sure he can withstand a surgical procedure unless it is done on an out patient basis. Chemo has been cancelled until further notice until we can figure out what is going on with the breathing.

    Thanks for your feedback..I truly  appreciate it.  

    Lung specialist

    Is the new pulmonary doc an oncology specialist?  What about a doc at one of the NCCN affiliated hospitals?  They are all considered To be the top in the nation.  

    http://cancercenters.cancer.gov/cancer_centers/index.html

  • Christine135
    Christine135 Member Posts: 71
    #7
    dennycee said:

    Lung specialist

    Is the new pulmonary doc an oncology specialist?  What about a doc at one of the NCCN affiliated hospitals?  They are all considered To be the top in the nation.  

    http://cancercenters.cancer.gov/cancer_centers/index.html

    dennycee

    The doctor we are seeing tomorrow is a specilist so we will see what he thinks. I talked with Mike's surgeon and the first thing that needs to be determined is where the air is coming from..is it from his endosopies that he gets every 3-4 week to stretch his throat that continues to close and are we nearing the end of the stretches? Is the air from the connection site in the esophagus? Is the cancer in his lungs that the scan are not picking up? Then the question needs to be asked if they put a chest tube in to drain it or do they let his body try and heal itself because he is so weak and thin- he weighs 113 so the main thing to find out is where the leak is coming from before they can really do anthing further for we have to pick and choose what procedures Mike can have for he does not deal well with the anesthesia.   

  • dennycee
    dennycee Member Posts: 857 Member
    #8
    Christine135 said:

    dennycee

    The doctor we are seeing tomorrow is a specilist so we will see what he thinks. I talked with Mike's surgeon and the first thing that needs to be determined is where the air is coming from..is it from his endosopies that he gets every 3-4 week to stretch his throat that continues to close and are we nearing the end of the stretches? Is the air from the connection site in the esophagus? Is the cancer in his lungs that the scan are not picking up? Then the question needs to be asked if they put a chest tube in to drain it or do they let his body try and heal itself because he is so weak and thin- he weighs 113 so the main thing to find out is where the leak is coming from before they can really do anthing further for we have to pick and choose what procedures Mike can have for he does not deal well with the anesthesia.   

    Will hold you in my heart.

    Please update when you learn something.  You will be in my heart and prayers. 

  • Christine135
    Christine135 Member Posts: 71
    #9
    dennycee said:

    Will hold you in my heart.

    Please update when you learn something.  You will be in my heart and prayers. 

    Update on Mike

    So today we saw the new Pulmonologist who spent over an hour with us going over Mike's CT scans from Wednesday as well as his results from his spirometry test which shows his lung air level is 41%. It appears Mike has a few factors that are contributing to his breathing issues. On top of having Stage 4 reoccuring EC is he was diagnosed with Stage 3 emphysema, air in the lining of the lungs, more so on his left side which is leaking into his chest scar tissue from radiation and chemo and the more powerful chemo he had at the end of last month. We can not rule out that the cancer has spread to his lungs so hoping the chest xrays will tell more but for now chemo has been put on hold until his breathing improves but there is no guarantee that will happen. He was put on Prednisone four times a day for one week, then each week after we cut down by 1 pill with follow up with the pulmonologist. We have to go weekly for chest xrays to watch the air in the lungs and chest and if it gets worse, then a chest tube will be put in to drain the air out but once again there is no guarantee that draining the air will help his breathing. So discouraging to hear this but at least we now have a few puzzle pieces together and we can grasp what is going on..just more kicks in the gut..  

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