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Restrictive Pulmonary Disease

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

First of all thank you to everyone who has follwed my stories about my husband Mike and his fight with re-occuring Stage 4 esophageal cancer. I can not thank you all enough for the support and prayers which has helped me in more ways than I will ever find the words for but thank you!!

Today was suppose to be our 2nd round of Folfox 5 chemo but due to Mike's breathing issues, he is not strong enough to do chemo until they figure out what is wrong. The doctors are at a loss for when they test his oxygen levels, he is in the high 90's whether he is sitting or walking but he struggles to get enough air into his lungs which exhusts him to no end. After talking with our Oncologist, he said Mike has been diagnosed with Restrictive Pulmonary Disease but when I ask him what exactly is causing this, he says he does not know, it could be so many different things from the cancer has spread into the lungs, COPD, scar tissue from surgery and/or radiation, previous chemo. Since Mike is too weak and is back to weighing 113, he is physically not able to withstand biopsies because of the anesthesia they use when he has his endocsopies wipe him out for 48 hours so they figured the Folfox 5 chemo would treat any cancer in his body, though we have no clue where any other cancer may be except in his esophagus. So tomorrow (Wednesday) we go for a CT scan withour contrast to see if this scan shows anything new since last month's scan at the pulmonary doctors office so we wait to see what the results of the scan show but chemo is on hold until doctors can figure out what is exactly wrong so Mike does not struggle for air, but like the Oncologist also said, there may not be any cure for his lungs which means chemo may be off the table indefinately. 

 

callerid
Posts: 99
Joined: Dec 2012

I have nothing to offer except prayers that they will find the cause and be able to resolve it. 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I am so sorry. Hopefully this will pass and he can regain enough strenth to withstand the treatment. We are praying, praying, praying. Please keep us posted.

Dad'sfight
Posts: 155
Joined: Feb 2013

I'm also at a loss for words. I have and will continue to pray for your husband. I know that when my father had his IL surgery we learned that the radiation really damaged his lungs. He had no lung issues ever but after surgery he couldn't breath on his own and was kept alive on ventilator. Our family was just devastated because we understood all the complications from surgery but never in our wildest dreams would we have thought lungs and coming out of anesthia would possibly take him.  He now has breathing issues, he's always saying that he can't get enough air when he takes a breath in. We were told that its scarring from radiation. I know that everyone is different, but maybe it's scarring. I remember how fustrating it was when Dad would have problems and no one really knew why and from what. I hate that feeling of not knowing because then my own mind runs wild. Then I google and get more worried. They told us for months that Dad couldn't have the surgery, wasn't strong enough, we just wouldn't accept no. I'm grateful that the surgeon was thorough, level headed, and very gifted because he decided to go ahead with it. At the time the feeling in the pit of my gut was horrible. I was so torn with the idea that Dad might not be able to have the surgery, it was like he had came so far and to be told this was it, was devastating.  I hope that you and your husband get better news with the CT scan.

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thanks for all the good thoughts and prayers. The CT scan showed air in Mike's chest and we are scheduled Friday to see new pulmonary doctor for a second opinion as there is talk of putting in a chest tube. I am not so sure he is strong enough for that but we will see what the new doctor has to say. Our previous pulmonary doctor said that he believes this is not the cause of Mike's breathing issues only a small portion so it remains to be seen what the new doctors will find..if anything.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Christine,

I don't know all of Mike's story but I got COPD after the IL surgery and radiation. I had some issues before treatment too. After I had breathing problems that didn't go away postoperatively, then I went to a pulmonologist and was told that I now have asthma, bronchiectasis and COPD. I was on a nebulizer for awhile and my breathing did improve but I also have fibrosis too. My pulmonary function does not really improve but I only have trouble most times going up stairs and rushing around. I hope a good lung dr can help Mike out. It is frustrating enough to battle this disease and then have other complications on top of it all. My thoughts and prayers are with him and hope he can be cleared for more chemo. take care,

Donna70

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