Pulmonary Fibrosis

My father tolerated 40 radiation treatments and weekly chemo without adverse affect. He the had 2 weeks off and then 2 months of weekly chemo, no more radiation. He developed acute shortness of breath which is stated as from radiation 2 months ago, but I suspect his chemo caused it. He is not responding well to steroid unless they are given IV and he is deteriorating with oxygen at 4L and severe weakness. Does anyone have experience with this? Are you aware of any treatments?

Hello Lois, I was diagnosed with colon cancer, stage 3 in June 2004. I had surgery and in Aug started on folfox 4 chemo which is 5fu, oxaliplatin and leucovoran (spelling?) Four months into the chemo I developed a dry hacking cough. I asked the dr if this was from the chemo and he said no. Unfortunately, it was. I continued with the chemo until 2/11/2005. Without going thru all that lead up to my hospitalization on Easter Sunday, I was diagnosed then with pulmonary fibrosis when I went into emergency as I could not breathe. If I talked, I went into such a coughing spell that I almost passed outand was gasping for breath. Anyway, the fibrosis WAS CAUSED BY THE OXALIPLATIN. Oxaliplatin causes fibrosis in only LESS THEN 1% OF PEOPLE ON IT IN THE WORLD!!! It can be fatal. I was living in Flolrida then and was about to move back to Pennsylvania....which I did. The dr in Florida put me on 50 mg of prednisone a day. I found out thru the internet that prednisone for this works on 10 to 20% of the people. Fortunately, it helped me. I gained over 50 lbs from the prednisone and it also caused me to get diabetes and osteoporosis. I was on oxygen 24/7 from Easter to August. Now I am on oxygen only if I exert myself, like going up stairs, cleaning up the dishes. The only way I can go to the mall, other then someone pushing me in a wheel chair, is leaning on a cart that I purchased. This is a serious disease. The ONLY TREATMENT FOR THE FIBROSIS IS STEROIDS and like I said, it doesn't work for everyone. My daughter is living with me because there are things to be done in a house and I can no longer do them. I am sorry about your Dad. If you have any questions at all, please email me.
I hope he is seeing a good pulmonary doctor. Again, I hope all goes well for your dad. Barbara 119

Thank you Barbara 119. Last night they said my dad was going to die and he signed a DNR. I insisted they give him solumedrol IV steroid and today he is sitting up, eating and on oxygen only (No Bipap). My father ripped up his Dnr form and is going to go to rehab to try to recover more. It pays to ask questions no matter who the doctor is and to not give up. Thank you again. Lois D.

Hi Lois, I hope your Dad is continuing to do well. I am not familiar with the steroid that you had them give your Dad. Do you think that is what made him improve so quickly??? Hang in there!!!