beckyg Posted March 18, 2004 Posted March 18, 2004 I took yet another trip to Houston yesterday, this time just to see my pulmonologist--the only one of the many doctors I have seen in the big city that I care to see again. I saw him in January after I had to go to oxygen 24/7. He set me up with a nebulizer in and attempt to get off the Prednisone--he ordered liquid steriods for the nebulizer, and said that I should be able to drop the prednisone and still get more steroid help directly to my lungs, rather that coursing throughiut my body. SO that worked great, for about 2 weeks. I cut the prednisone down; the breathing was improving--I still needed the oxygen to do anything ,but I was taking it off when i was sitting still in my office. Then my breathing abruptly got worse and no one can say why. SO I increased the pred again, whihc helped the breathing, but then I started seeing double. Anyway, I saw the pulmonologist yesterday, and he said several things. Firstv he said that it is very rare for radiation to continue to cause inflammation 10 months later, which is where I am, but that if it were scar tissue causing the breathing problems, steroids shouldn't be having much of an effect on it. So he ordered another CT scan to take a look, and he wants me to come back soon for a bronchoscopy so he can really get a good look. He said he suspects that my tumor is trying to close off my airway, and he can try to open it up during a bronchoscopy. He also sias he was worried that radiation might have damaged my heart and that might be the cause of my shrtness of breath, so he sent me to a cardiologist. She did an EKG and an extended sonogram and told me that heart is in good shape--it is beating well and strongly and there is no pericardial effusion. So at the moment i am still not breathing well and I am really frustrated by it, but it makes me feel a lot better to have someone with ideas, trying to figure out what the problem is instead of just prescribing more drugs all the time. I don't know when I start chemo again--probably next week sometime. My oncologist took the week off for Spring Break this week. Becky Quote
Don Wood Posted March 18, 2004 Posted March 18, 2004 Thanks for the update, Becky. I agree that you have a great pulmonologist. So does Lucie. We are very fortunate that we have a great onc as well as a great pulm. Best to you. Don Quote
Snowflake Posted March 18, 2004 Posted March 18, 2004 Geez, Becky...sometimes it seems like some of your doctors are in a Keystone Kops caper...or a Three Stooges mode... Glad your pulmonologist sent you to a pro that ruled out a very big ugly! I hope they get to the bottom of your issue soon - like YESTERDAY already! Take care, have patience (yea, right!) (there ain't one of these little buggers with crossed eyes) Becky Quote
Elaine Posted March 18, 2004 Posted March 18, 2004 Becky, I so know what you mean and I am so glad you found someone who wants to find out the CAUSE of your symptoms instead of merely throwing "treatment" at an unknown. Simple logic says that the cause(s) are needed to be able to find and implement solutions. Shheesh... you;d think that would be learned in med school, don't ya? Becky, I think of you each day--there has to be a way through this to a sunny side for you and all of us. You have so much on your side, and now at least one of your doctors can be counted as such. Elaine Quote
john Posted March 18, 2004 Posted March 18, 2004 It is really good your Dr is trying to figure out what is going on. But there are some people who have problems with pulmonary fibrosis 1-2 years after radiation. I believe Cathy's father? or someone on hear had major problems with fibrosis. http://www.emedicine.com/radio/topic590.htm pentoxifylline (PTX) and vitamin E may help? http://bjr.birjournals.org/cgi/reprint/71/848/892.pdf a very small study but it did use a placebo on patients and (p=.038) Your the math prof, it was statistically significant. hopefully the statistics were done correctly http://www.ncbi.nlm.nih.gov/entrez/quer ... s=12829674 MaryAnn didn't you try this??? http://www.clinicaltrials.gov/ct/show/N ... 4?order=17 Quote
Ry Posted March 18, 2004 Posted March 18, 2004 First I have to say that John you never stop amazing me with the information you retain and research for us. Becky, I am glad your heart is ok. Glad you have someone you trust and feel confident in. Rochelle Quote
john Posted March 18, 2004 Posted March 18, 2004 Thanks Ry - It was Cathy's father who had the fibrosis. Dr. Sam had it also. It seems like a lot of people get fibrosis, at least the small sample on this message board. Not sure why doctors don't recognize this? Quote
beckyg Posted March 18, 2004 Author Posted March 18, 2004 Clarification--he never said that it is rare for people to get fibrosis, but that if it were fibrosis, the steroids shoudln't make much difference. I notice a big difference in my breathing between 10 mg a day and 20 mg a day of Prednisone, which he said points to inflammation (pneumonitis) rather than scarring (fibrosis). Quote
MO_Sugar Posted March 18, 2004 Posted March 18, 2004 I am glad your Doctor has put together a plan of action for you and is moving forward. Nothing worse than sitting around waiting! Prayers headed your way! God Bless, MO Quote
Tiny Posted March 18, 2004 Posted March 18, 2004 Becky- So glad you have SOMEONE in whom you feel confident. Sending you my best vibes for easier breathing. Quote
ginnyde Posted March 18, 2004 Posted March 18, 2004 Becky, I second and third everyone here. A doctor that you like and trust and who has a PLAN is very good news. Ginny Quote
cathy Posted March 19, 2004 Posted March 19, 2004 Becky, I just read your post and yes it was my dad who had fibrosis, he also had an awesome pulmonologist, wish I could say the same for his oncology team. Sounds like your pulm is taking the right steps to find out what is causing your shortness of breath. Lets hope they get to the bottom of it soon.. John, I am not sure why they dont recognize the fibrosis, they are never to quick to diagnose the pneumonitis either. My dad developed pneumonitis before he ever finished radiation. His radiologist kept telling him he couldnt have it because it USUALLY doesnt occur until a couple months after radiation, My dad did end up walking out on the quack and discontinued radaition. He was probably developing the fibrosis at the same time... Quote
john Posted March 19, 2004 Posted March 19, 2004 Becky Thanks for the clarification becky and I hope things work out well. I was always under the impression that pneumonitis and fibrosis where essentially the same thing or that pneumonitis could lead to fibrosis. I think that is what Dr Sam said a long time ago. Quote
Guest KellyB Posted March 19, 2004 Posted March 19, 2004 Hi Becky..I have seen your posts for a longtime. Your daughter is beautiful I admire your bravery and endurance, working and all. My father is in a very similar predicament with the prednazone. His breathing became worse, and he went on the steroid, and in turn that has many effects on the body. He was just hopitalized Monday night for heart arythmia due to the steroid doage increase and the overuse of his albuterol nebulizer. The doctors explained how oral steroids can have damaging effects on the body, it was a good choice to decrease the dosage. I am an asthmatic myself, so I know the torture of struggling to breathe. I hope the change serves you well and my thoughts and prayers ae with you....Kel Quote
mhutch1366 Posted March 19, 2004 Posted March 19, 2004 Becky, glad you are in the hands of a competent pulmonist. Listen to him. Sorry about the steroids, they're no fun at all. Still way better than the alterntive, eh? XOXOXOX MaryAnn Quote
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