December 23, 2020 at 7:34 pm #26610AnneParticipant
I seem to not fit in with this group although I have pulmonary fibrosis. My oxygen needs are enormous when I stand or walk more than 12 feet. I am old. I’m on no medicine, nor am I in a trial. Everything seems to be for idiopathic pulmonary fibrosis.
So, if you have radiation induced fibrosis which is getting worse, please get in touch with me.
December 23, 2020 at 7:59 pm #26611Mark KoziolParticipant
Hi Anne, I can assure you that fit in with the forum. I also had nigh oxygen needs when I stood up. I was fortunate enough to have received a transplant. I know there are forum members who have radiation induced pulmonary fibrosis. I hope these members see your post and communicate with you. I’m not sure what other treatments are used for this disease. There also many members who have pf due to their having a muscle connective disease or an autoimmune disease. I wish a happy holiday season, mark.
December 24, 2020 at 2:24 am #26612
I haven’t got radiation PF but chemical induced PF + 2 other lung diseases provoked by said chemicals and emphysema from me smoking, my condition is getting worse rapidly now, have recently jumped from 2ltspm to 6 and after two months that is now not enough. Next Tuesday I will have a Y connection to hook me up to 2 big tanks at once, could go up to 12ltpm like that. I do take Prednisone for the coughing. How old is old? I am 74 and live alone in a foreign country with my life line,s my two dogs, they are my reason to continue to fight.
Stay strong and keep away from nasty viruses Sue
December 24, 2020 at 6:40 pm #26636
I beg the question, how would we know if our IPF is not radiation triggered? I have contemplated this as a prospect. I have lived much of my life on an island in the Irish Sea. In my lifetime, now 78, there have been certainly 2 may be 3 occasions when we had food restrictions in place for a significant number of months. The first by recollection was a release by the British Nuclear Establishment in Cumbria only some 50 or 60 miles distance. Was it milk at that time contained strontium 90?
Then the cloud from Chernobyl shut down the consumption of sheep meat from those grazing on the uplands. That restriction was for over one year, again may have been longer. I was puzzled that the fallout seemed only to restrict agriculture from high ground. Surely it covered us all? As IPF is supposed to be a rare condition I ask myself how do I know personally 3 others (between 2 and 10 years older) and 2 others though friends, in a population of 75,000? All long term local residents. None of the 5 were cigarette smokers!
I suspect that the disease is multi faceted, air borne particulates (car brakes, clutches, tyre wear), industrial exposure, workplace environment, and a genetic pre-disposition.
Ladies and Gentlemen here is wishing you all a ‘contented’ holiday period, and hope for the future.
December 25, 2020 at 3:26 am #26639
I think Anne’s PF might have been caused by chemotherapy a known cause for PF. A right B…. that curing one disease has the potential to cause another. But yes you are right in your thinking too, we have no idea of the harmful substances in our food nowadays.
December 26, 2020 at 7:23 pm #26651AnneParticipant
My fibrosis was caused from my ration treament used to get rid of my lung cancer along with chemo. It is something that is more often seen in breast cancer around the muscle or heart. All of these treatments are not used much anymore. If fact, even my treatment isn’t used, but I had such yucky lungs and my tumor was right on the heart, I had to go on the old fashioned type of treatement used years and years ago.
December 25, 2020 at 5:06 am #26640
Thanks for your comment. I hadn’t thought of that path, but perhaps should have.
My wife, also a Susan, has recently, just over a year ago, had her thyroid removed. This followed by “ablative” radio-iodine treatment, which may need repeating. My thoughts were along the risk / reward line. What would be the risk of the minimal residue of throid tissue growing a new cancer, against the whole body treatment with a radioactive substance? We follow the medical advice. Regards, Joe
December 25, 2020 at 5:14 am #26641
Yup Jofac, all we can do is follow medical advice, though I do a lot of research as my combination of lung problems is very rare.
I wish your wife well.
December 29, 2020 at 9:45 am #26663
Yes, attendant risks Of treatments! My Susan has been found to have low bone density, so now treatment for that, as it seems high levels of thyroxin tend to accellerate osteoporosis. Today a visit to her GP, 2 new prescriptions ….. one of the treatments proposed causes two other risks. So it goes,
Best wishes for the New Year.
Sorry mediator, off subject, but we mammals are complex beings!
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