rinksgal Posted January 17, 2004 Share Posted January 17, 2004 Well Darrell had another ct scan this past monday and we saw the regular oncologist on Thursday. He had some more shrinkage on the largest lymphnode tumor. It went from 1.4 x 1.8cm to 1.2 x 1.2 cm.. They also admitted that the place they thought might be a new tumor and the reason for them doing a scope about a month ago. They now say is radiation damage. They say there is damage to the right lower lobe and the left upper lobe. They say he has radiation pneumonitis. They also said his pleural effusion is still stable and that his rt.lung is more collapsed. Not completely though. Places on liver haven't changed and they still say probably cysts. They plan to do nothing for 2 months, unless something develops on this end. They gave him albuterol inhalers to use to help with his cough. He has also been on antibiotics twice. Can someone tell me their experience with radiation pneumonitis? and can this alone kill him? They said it will get worse before it gets better. He finally got his appetite back now and he is actually feeling pretty good. Still no wind, and not alot of energy. If anyone can give me some insight on this I'd appreciate it. Christy p.s. I haven't been on here much lately and I apoligize to everyone for this. We had 10 inches of water in our basement in which this gave me added work, It caused us to lose one freezer and the furnance was out for 2 days, no hot water for 2 days either!Not to mention all the damage to everything we had stored there. I had to go unplug a drainage ditch that had gotten blocked from all of the rain,at night in the dark, if I didn't do it then, it would have froze over night, and the water would have never drained out of the basement, because tempatures were starting to drop. Also my kids were here to visit over Christmas.. Due to Darrell being so sick I hadn't been to visit them.I know they are young adults now, but I still missed them so much..9 months that is the longest I've gone without seeing them!! Christy Quote Link to comment Share on other sites More sharing options...
Lisa O Posted January 18, 2004 Share Posted January 18, 2004 I have read about it on this forum. I think Becky has discussed it if you want to read back on her posts. I do believe that I have read that it worsens while the radiation is "still working" and then your lungs have a chance to start healing. I think on a recent post she was going to start using steroids in a nebulizer to lessen the amount of systemic steroids required. I'm sorry I can't be more helpful. I have tumors in all lobes so I have not been a candidate for radiation. I hope someone with answers pops in soon. Lisa Quote Link to comment Share on other sites More sharing options...
norme Posted January 18, 2004 Share Posted January 18, 2004 Christy, I swear, what is next for you and Darrell. Where were his children who are grown-ups. Not sure if that is what Buddy had for it was never in any of the reports but he must have because of the horrible time swallowing and the choking at times when he would go to swallow. The not being able to catch his breath at times. This went on for a very long time. Sure hope everything gets back to normal whatever normal is to all of us.. Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted January 18, 2004 Share Posted January 18, 2004 Hi Christy, Glad to see you posting again. My pulmanory dr told me I had rad pneu but none of the other doctors would agree. I feel that I did tho. Doctor put me on Predisone 60mg. Thank God I am off them now. I hated that drug. Sam was the one that kept me posted on the subject. You might research his post. He did send me a link once but for the life of me, I have lost it. As far as it being deadly I don't know bout that. My doctors for whatever reason, won't admit it. Perhaps they are scared of a lawsuit. I am thankful to be alive and not the money. Hopes this helps some and sorry I could be of no more help. Bruce Quote Link to comment Share on other sites More sharing options...
beckyg Posted January 19, 2004 Share Posted January 19, 2004 Christy, It semes like all the imformation about radiation pneumonitis out there is contradictory. I started having real trouble breathing in July and my medical oncologist diagnosed padnitaiotn pneumonitis and put me on a low doe of prednisone and at home oxygen. Things improved dramatically over the next six weeks--I went off the oxygen and started teaching again in the fall, but when I tried to get off the steroids, the breathing got worse again. I just saw my pul,pnologist last week and am going to try the nebulizer and inhaled steroids to see if that workse better for me, as i am now back on oxygen 24/7 and still using the prednisone. He told me that pneumonitis should have cleared up long ago--this is because of scarring. Good luck to both of you, Becky Quote Link to comment Share on other sites More sharing options...
rinksgal Posted January 20, 2004 Author Share Posted January 20, 2004 That is true that they don't like to admit to someone having radiation pneumontis. Why I'm not sure, but the regular oncologist's intern told us that is what he has and then his oncologist agreed. Like Darrell says as long as hes alive he doesn't care about anything else, if they can treat it. They also mention alot of scar tissue forming. They talked about putting darrell on steroids, but chose the inhaler instead.His Oncologist didn't really want him to go on them if at all possible. From things I'm reading I'm wondering if he shouldn't see a pulmonary Doctor? How would Darrell benefit from seeing one if he does? Don't know if I could talk him into that or not, hes never seened one to my knowledge. and what is a nebulizer? Is that the same as an inhaler? Norme, Darrells kids were in their rooms, one playing playstation, and the other one on the internet. Just to keep peace, I just do everything. Lord forbid if you asked them to do anything. I had asked his son the day before about unplugging the ditch which was causing water to run off into our yard, his answer was "ahh Dad can do it." I commented with (yea right) but this was before we realized it caused the basement to flood which has never flooded in the 50 years Darrell had lived here. Guess all of the heavy rain carried debry down and blocked it..Those kids of his are the most worthless and I hate to say but will have a lot of regrets!! If they were mine I would kid their behinds!! His son did empty the dishwasher yesterday which shocked me to death. I've never asked him to do that, and didn't even know he knew how! lol Since I posted the furnance went out again, this time something to do with a ground wire. Temp here this am was 0 degrees. Thank God for the one wall heater we have. I'm like you Norme, What is normal anymore! Not my life, but I'm just glad hes doing as good as he is for now. I am praying for you and buddy too, and everyone else on this site.. Better get off of here, I have things to do before I go back to work...all of our outside hydrants are froze up so now I have to carry buckets of water outside for the pigs and animals... oh well just another lovely day at rinkerville! Thats what we call the farm. Thanks everyone for your comments. I'll try to spend more time on here, just doesn't seem to be much these days. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 20, 2004 Share Posted January 20, 2004 I had "reactive" airways for about 12-15 months, anytime a virus or cold looked at me, my breathing got tight and I got winded, really winded. I didn't have the 02 at home, but I had prednisone 4-8 days at a time, plus the nebulizer (like an inhaler, but mixed with saline and bubbled into mist that you breathe) every 4 hours when it got bad. Still, I stayed out of the hospital with it all but twice, once pneumonia and once, earlier, just so much bronchiolitis and congestion plus this tight chest ( like asthma I think) I couldn't walk across the room. The pulmonist felt it was due to radiation. He didn't come right out and say pneumonitis, but it sounds about the same, bottom line. Gradually it got better, when I got a cold it didn't get as bad as fast, and when it got better, I was able to breathe better and better. I still get winded some, I do have some scarring (COPD) with obstruction and restriction both... but it beats the alternative. The nebulizer's advantage is that it also carries moisture, and dispenses medication slowly, so its more effective at getting the meds in, and generally more effective at loosening things up. That's what the pulmonary therapists give you in the hospital, those breathing treatments. Easy enough to take at home. Good luck. You are in our prayers, MaryAnn Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 20, 2004 Share Posted January 20, 2004 Christy, I hear you on worthless kids and would like to form a sort of support group.... Of course, it would have to be "underground" so the guilty don't form some kind of death pact against their step-monsters... I'll bet that between the two of us, we could write a book! "101 Uses for Otherwise Worthless Kids".... Hang in there, make sure to ENJOY the extra crap around the house so when you're older you can tell the grandkids how much worse it was "back in the day"... (Hey, proactive thinking, right?) Take care of YOU and be safe! Becky Quote Link to comment Share on other sites More sharing options...
john Posted January 20, 2004 Share Posted January 20, 2004 Becky, You might want to look at Fays thread on CYP3A4. I believe steriods are CYP3A4 inducers. If you were given Iressa and steriods at the same time I think this may decrease the effect of Iressa. Maybe something to ask the Dr about - Thanks to Fay now I know a little bit about CYP3A4 John Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 20, 2004 Share Posted January 20, 2004 Christy, my dad had difficulty breathing after radiation in the fall-I went with him to the dr. and we saw one of the dr's that I wasn't as crazy about (dr.L), I brought up the possiblility of radiation pneumonosis-his response was something like "...weeelll, he does have lung cancer..." "HE DOES? " DUUHHHhhhh...anyway, his blood oxygen levels were well within normal range, so he didn't qualify for Oxygen, we were all afraid of the fluid building up on the lungs again-and prayed for it NOT to be...the next week when Dad went back and saw Dr. Gold (LOVE HIM!!!) I wrote down for my mom to ask HIM if Dad might have radiation pneumonosis, and the Dr. looked at films, etc. and said, "yep, he's got radiation pneumonosis" and perscribed prednisone (pill form), this not only aided his breathing, but also helped his apetite return a bit-also a HUGE PLUS. Christy, you are SO right, I got the impression that Dr. L just did not want to consider the R.P.-kind of like when you bring your infant to the pediatrician, and say that you think the teething is causing a feaver, and they act like, "teething does NOT cause fever", it just pisses me off. They treat things like folklore or something. Oh, and as far as those step-kids go, One day they will regret not giving the time and the attention that they should to their wonderful father and step-mother!!! I truly believe that 'what goes around, comes around again to bite you in the A$$!!! Take care, and glad to see you around again...deb Quote Link to comment Share on other sites More sharing options...
rinksgal Posted January 22, 2004 Author Share Posted January 22, 2004 Thanks everyone for commenting, I wish I had more time on here, I always vented here alot.. and tried to offer support to others, but I just don't have the time. You know I hate to complain about his kids, and I understand him not wanting to ride them, He doesn't know how long he will be around and I'm sure he doesn't want to spend what time he has fighting with them. So I just do everything, and keep my mouth shut. Sometimes I think I bite my tongue so hard, It just about falls off! lol I never knew I had it in me to control my mouth! I also don't complain hardly to him about it. That would just keep him upset, and I don't want that. I could really write a book, maybe we should get together. Thanks for everyones advice and caring!! Christy Quote Link to comment Share on other sites More sharing options...
candee Posted January 22, 2004 Share Posted January 22, 2004 Christy, I had radiation pneumonitis early October. My onc treated me with decadron 4 mg tablets 4X a day. It took care of the breathing, but all the side effects were ugly. I was on the decadron for about 4 weeks and then they started weaning me off them. I kept up with my breathing progress and pushed my Dr to wean me off. By Christmas I was looking pretty normal again (not like a huffy-puffy woman anymore and had lost most of the weight that I had gained) and my breathing was as good as it had been back in September when I was still riding my bike along the shore. It did actually take a while for all the fluid level to get to a minimum and the inflamation of the radiation fibrosis to die down (see signature below), but it has and still is. I hope that helps! I know you have gotten a lot of info on this, but, as the saying goes - "Knowledge is Power" Blessed Be, Quote Link to comment Share on other sites More sharing options...
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