Viewing 17 reply threads
  • Author
    Posts
    • #26610
      Anne
      Participant

      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.

      anne

    • #26611
      Mark Koziol
      Participant

      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.

      • #33116
        Richard D.Gueard
        Participant

        How would you know if it is radiation induced

        • #33118
          David Reno
          Participant

          Hi Richard, I guess You don’t know 100%. When the Surgeon that did My lung biopsy was looking at My CAT scan He said “sure looks like radiation scaring” after the surgery He very sure that rad. was the cause of My PF. Two other Drs. agreed. All We can is trust the Doc’s know what they are doing. Have a good day.

          DJR

    • #26612
      Susan Howitt
      Participant

      Hi Anne

      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

    • #26636
      Jofac O’Handlin
      Participant

      Hi Anne,

      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.

      Regards, Joe.

      • #32962
        Anne
        Participant

        Joe,

        I had chemo and Radiation for my small cell lung cancer.  My cancer was cured and I was fine, then 6 months later I got PF in the area I had the radiation.  I’m called Radiation induced PF and interstitial lung disease.  The new drugs (5 or 8 years new chemo) are not given to people like me.  I’m told to loose weight and exercise.  HAHAHA!

        anne

    • #26639
      Susan Howitt
      Participant

      Hi Jofac

       

      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.

      • #26651
        Anne
        Participant

        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.

         

        anne

    • #26640
      Jofac O’Handlin
      Participant

      Hi Susan,

      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

    • #26641
      Susan Howitt
      Participant

      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.

    • #26663
      Jofac O’Handlin
      Participant

      Thanks Susan.

      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.

      Joe

      Sorry mediator, off subject, but we mammals are complex beings!

    • #32916
      Natalie Mondor
      Participant

      Hello Anne,

      I’m seeing this post only just now in August 2022. I too have radiation-induced PF, from radiation therapy in 1984 for breast cancer. It also led to lung cancer in 2008.

      I have learned a lot from members of these forums and I  hope by now you have too. Sometimes it’s hard to find specific information that I know I saw but lost the spot.

      I hope you are doing better and will stay in touch.
      Best wishes
      Natalie

      • #32992
        Anna Jones
        Participant

        Natalie,  Just wanted to say best wishes to you, too!  My PF is also from breast cancer treatment (3 years ago).  I also learn a lot from everyone sharing here.

        Take care, Anna

    • #32950
      Meredith
      Participant

      I am an old lady,79, who had radiation and chemotherapy for breast cancer 30 years ago. It may have caused my IPF. A lot of things may have caused it. It doesn’t matter now. What matters is that we must concentrate on feeling pretty good each day as it comes.
      If you have IPF you’re not seeing an oncologist anymore.
      Listen to your pulmonologist and be compliant. Every case of IPF presents with slightly different symptoms. You only have today so make it be as good as possible. Have some ice cream (not a quart, eat chocolate, haves a little wine, kiss the cat.

      • #32961
        Anne
        Participant

        Radiation induced Pulmonary fibrosis is not like IPF in treatment and life expectancy.

        • #32965
          Natalie Mondor
          Participant

          Anne,

          Could you please elaborate on this ? I don’t have any info on how the treatment for radiation induced ipf is different or about the life expectancy. Thanks in advance.
          Natalie

        • #32971
          Anne
          Participant

          IPF have a shortened life span and the new drugs are helping people.  IPF sometimes get lung transplants and get better.  There is no reason that people get IPF. Pulmonary fibrosis is a type of interstitial lung disease.

          I dont believe those of us with radiation induced PF have a much shortened life span.  I’ve had mine for 6 years now and I’m still about the same.  Maybe more prone to upper lung infections.

          I know ‘my’ radiation induced PF came from having my lung with small cell lymphoma shot once a week for a couple of months with radiation to try and kill the cancer.  I was given a sheet to sign of all the bad side effects I could get caused by my radiation treatments.  Of course, I didn’t read them and never expected to get any of these weird things.  Well, PF caused by the radiation treatments was one of the bad side effects and I got it.

          Some people who have breast cancer and radiation treatments can get radiation induced PF, too.  Not as many as those of us with lung cancer.

          You’re more likely to develop interstitial lung disease if you:

          • Are over 70.
          • Were assigned male at birth.
          • Smoke or used to smoke.
          • Have a history of certain illnesses or conditions, like hepatitis C, tuberculosis, pneumonia, COPD or connective tissue disease.
          • Work around substances that can irritate your lungs, like asbestos, silica, molds, fungi or bacteria.
          • Have had chest radiation.

          Hope this helped a little.  If you want more, let me know

          anne

    • #32964
      Anna Jones
      Participant

      Hello Anne,

      I am 64 years old and was diagnosed with radiation induced PF in 2019.  I have had 3 pulmonologists and none of them have provided or suggested any treatment.  (My current doc is in a Center of Excellence for pulmonology.)  From what I can understand, the Ofev or Esbriet treatments are not appropriate for this type of ILD.  I am currently deciding whether to have another CT scan, since the last one I had was one year ago.  I think I will wait since currently I am not on oxygen and any info gained about possible progression of the PF could be offset by the extra radiation the CT scan requires be used for the diagnostic.  I know I will absolutely need more CT scans in the future and I’m trying to not tip the scales of total radiation exposure to up the odds for creating any lung cancer.  Such decisions!

      There is so much we can not possibly know but we have today.  I hope today that you have something fun, have some hugs (be they from a person or an animal!), have a laugh, see something beautiful, tell someone how fabulous they are and how grateful you are to have them in your life.  This is advice I try to live up to – I’m not always very good at it, but I try!  When I think of all of you it helps me to be kinder to myself, to maybe give myself a little treat (time to relax, something delicious, music, a pair of new athletic shoes for walking) and that I have a lot to be grateful for.  I sincerely wish you (everyone that reads this) all the best, every day.

      • #32967
        Natalie Mondor
        Participant

        Thank you Anna Jones. Your words inspired me.
        Do you have any more information on treatments for RI IPF ? My pulmonologist said he would put me on Ofev if the prednisone + physical therapy didn’t work. But I am doing well on the prednisone and increasing the exercise. I was diagnosed by process of elimination in May 2022 and have been on oxygen 24/7 ever since.
        Today was a down day, so thank you again for lifting me up.
        Natalie

      • #32968
        Natalie Mondor
        Participant

        Sorry! I meant Anne, not Anna !

      • #32970
        Anne
        Participant

        what a wonderful last paragraph.  You are quite the writer.  Thank you.  Now, about Radiation induced PF.  No, the new drugs wont help us.  Ours came from the radiation and it “killed” some area of our lungs.  Our fibrosis does not grow like the IPF does.  I’m hoping since you’ve gone a few years without needed oxygen, you wont ever need it.  You probably had good lungs before your radiation treatments and just a small part of one lung was effected so you’ll be lucky and not have problems.

        I went for a CT scan once a year for 5 years and now every 2 years.  Remember, I had lung cancer, so they’re checking for that.

        I went to arthritis arobics in the therapy 92degree water for a 45 minute class and loved it.  Came home and rubbed all my sweet furry babies and ate something really sweet. Thank you.

         

        • #32978
          Anna Jones
          Participant

          Hi Anne,  Thank you so much for your kind words.  I don’t talk with many people about my PF so this forum is a wonderful relief valve, and very informative and always supportive.  The support is the best, and I benefit from supporting others, too!

          I’ve done some “deep diving” into medical journal articles and online videos.  (Sloan-Kettering has some excellent lectures online for grad students re: radiation fibrosis.  Seeing the educator explain the outcomes he has witnessed over the years was very helpful for me.  It also drove home the fact that all Doctors are not all on the same page or very knowledgeable, at all.  Some doctors I’ve seen (all commenting on the fibrosis whether they are pulmonologists or not) do not want to say “I don’t know” or “this was a mistake” or “this treatment would have helped you, but it’s too late now.”  The first case is ego, the second and third cases they are covering either their own liabilities or someone else’s.  The only reason I know this is that I learned that when radiation is found to have damaged and caused inflamation to lung tissue it is VITAL to treat with prednisone (current treatment standard) to halt/slow the inflammation or the damage which can continue to spread and result in fibrosis. As the inflammation spreads it sets off a chain reaction creating more fibrosis.  And this chain reaction can go on for quite awhile if the inflammation is untreated.  There is a window of time in which prednisone treatment can be prescribed to stop the spread of the inflammation leading to permanent damage (the fibrosis).  Miss the window and you get more fibrosis.

          There is not nearly the same amount of info available regarding the progression/non-progression of PF in radiation-induced lung fibrosis as info for IPF.  I go on jags reading what I can, but then I have to stop and live my life today. What I have found from reading various medical journals/pubmed/etc. is that the range of time DOCUMENTED by medical professionals regarding observed progression of lung fibrosis due to radiation damage to lungs is 2-10 years.  Now, saying this, I know I have not read everything out there, and I know this is VERY different than anything that people with IPF deal with.  (I think of you all and pray for a cure for you every day!).

          Our bodies are very complicated and lungs are enclosed organs that are not easy to observe without a lot of intervention, so I do understand trying to follow an individual through their life history and to be able to nail down cause and effect when it could span decades is difficult.  But, this is what we all may choose to do if we are not just relying on our docs and the info they give us.  I personally want to know if there is any treatment for my own situation, and if so, I will seek it.  If not, I will get on with my day.  Unfortunately, I came to this need to seek info on my own after I realized I had been lied to.  This is additional damage that I have worked to heal from, but it took time to accept.  I needed and continue to need understanding to reach acceptance.  I need acceptance to reach adaptation to what is my own physical reality.  Understanding to Acceptance to Adaptation.  That’s an individual journey for each of us!

          I know more about what happened to me, but I am mainly writing a response here to qualify that a lot of injury from radiation to the lungs 1a) could be prevented if pneumonitis (lung tissue inflammation) is present and recognized and 1b) prednisone treatment is prescribed within a limited time window and 2) this lung damage caused by radiation to lung tissue can progress over years.  (Mine has.)  How much and at what rate will be based on the individual, and damage done by radiation sets up cells for other issues (ex: cancer) down the line, whether those cells get fibrosis or not.

          I do not expect my PF to ever be similar to the fibrosis that people with IPF have.  However, I thought it was important to let everyone know that the effects of radiation to the lungs is not always a “one and done” situation.  If I find out any medical info that could be of benefit, I will share!

          I still believe that the best life I can lead (for me and my family!) is to try to balance reading medical research/reading shared info with getting up every morning and being purposeful about whatever time I may have left on this earth.

          I’m not always good at heeding my own advice.  So reading this forum and participating reminds me to try each day to make it the best, and to be grateful for all of you for sharing!  You really help me.  I hope you all have a fabulous day.

        • #32982
          Anne
          Participant

          Wow, you really do study our type of fibrosis.  I hope you will continue to read up on it and keep me informed on what you find.  I’ve never been told my fibrosis could get worse and that I need prednisone.  Although I’ve been prescribed it over the last 6+ years for upper respiratory infections.  Would you need to stay on prednisone for the whole time (2 to 10 years) or just take z-packs every so often?

          I went to Cleveland clinic (2nd in US for Radiation induced PF-1st is Mayo clinic) I highly recommend them–all staff great!!! The doctor didn’t recommend any treatment for me.  Said the chemo for IPF had too many side effects–one of the main ones being diarrhea and I already have a horrible time with that (cant take any  oral diabetic drugs because of that) I get leaky diarrhea a couple of times a week even taking things to help me not—-so, no chemo for me.  She didn’t mention prednisone.  Oh, she told me to leave the Hopkins satellite office and go to the main Hospital and see an “old fart”.  I now have done that and will see my “old fart” of a doctor in December.

          anne

        • #32991
          Anna Jones
          Participant

          Anne,  Regarding your questions about what I know about Prednisone: it is used by many docs to treat inflammation in many different parts of the body, like to treat a bout of inflammation in the intestines for someone with Crohn’s Disease.  Many people on here share that they are prescribed Prednisone for brief periods and some people take it daily because their doc believes they need it to keep inflammation down in their lungs.

          Not everyone with radiation-induced PF needs Prednisone.  It treats inflammation, not the direct damage from radiation.  Your doc decides whether you have inflammation that needs to be treated and how bad it is.

          What I was talking about was if you were diagnosed with Pneumonitis (inflammation of the lung tissues) caused directly by radiation.  If you get the Prednisone early, when you first have the symptoms of Pneumonitis, it can halt/slow the development of fibrosis at that time.  You can end up with less fibrosis to live with permanently.  Your doc would determine when you no longer suffer from Pneumonitis and would decide when to stop the Prednisone.  But that is treatment that needs to occur during a specific window of time (early after radiation injury).

          We know that radiation to the lungs can cause fibrosis.  What I was trying to say is that inflammation caused by that initial radiation injury can spread and can also lead to additional fibrosis in the lungs.  If you get Pneumonitis and do not receive Prednisone, the inflammation is allowed to spread.  Eventually it will stop on its own (if your body is not too weak).  You can get more fibrosis than you would have had if the inflammation would have been stopped with Prednisone (current treatment standard).  That’s what happened to me.  But, that’s NOT going to happen to everyone and I hope that didn’t happen to you and I hope it doesn’t happen to anyone else.

          It sounds like you have great doctors!  I feel like the one I have is pretty great, too.  I wish you the very best with your “old fart” doctor!  Sometimes the old farts know the most.

          Take care.  I wish you all the best.

           

    • #32972
      Margaret
      Participant

      Hello all,

      I was diagnosed with radiation induced PF in January of this year six months after completing radiation for breast cancer (no chemo.)  The pattern of fibrosis is different from that of IPF: linear and reticular (net-like) rather than honeycombing. Prednisone is the standard first-line treatment. Ofev (not Esbriet) has been approved for use if steroids don’t work. Like Natalie, I am doing well on prednisone. It’s good to know that there is now another option if that becomes ineffective.

      RIPF is a rare side effect of breast cancer treatment (3/1000) and a bit more common after lung cancer treatment. Initially it seemed unfair that  trying to cure one potentially fatal disease caused another. However, at least I know why this has happened as opposed to those who develop IPF for no known reason.

      As Anna wrote, we need to move forward and focus on the good things in our lives and our support for each other.

      • #32973
        Natalie Mondor
        Participant

        Margaret,

        Just reading your thoughtful post. You gave a lot of information that is new to me (thanks !). May I ask if you have more details ? Is the prognosis and life expectancy different for RIPF ? How long is the prednisone treatment ? Is any improvement possible ? Sorry for asking all these questions but I learned more from your post tonight than in 3 months of searching !

        Gratefully,

        Natalie

      • #32983
        Anne
        Participant

        It’s nice to know about the prednisone treatment for people who just get RIPF.  When I got my RIPF 6 years ago no one put me on steroids.  I had an oncologist, a radiologist and a pulmonologist.  I hope you are doing well with your treatment.

        anne

    • #32990
      Margaret
      Participant

      Just like IPF where some people last a couple of years and others are still around nearly 20 years after diagnosis, RIPF has varied outcomes and is rarer so there is much less data.  Anna has good information that I have also seen in scientific papers (all that chemistry and physics I studied in college has come in handy.) There is no cure for the fibrosis that has already occurred, but prednisone can slow/stop its spread and clear some of the infiltrates (consolidation or ground glass opacities) that accompany the out-of-control fibrosing process. RIPF usually starts in one lung and can stay in the radiation portal, move out of the portal and spread through the same lung, or spread to the other lung as well. Everyone’s case is different.

      Prednisone does have some bad side effects (increased blood sugar, osteoporosis, glaucoma, weight gain) which is why pulmonologists monitor you, adjust the dose, and decide if the pros outweigh the cons.  I am switching to Flovent HFA, an inhaled steroid, which targets the lungs directly and does not cause as many systemic problems. My pulmonologist does not know if it will work as well but figures it is worth a try in my case. Ofev was FDA approved in March of 2020 for any kind of chronic progressing fibrosing ILD so it is now an option for RIPF that does not respond to steroids.

      RIPF is sneaky in that it can stop progressing and the chain reaction can be set going again years later by many cancer treatments, other drugs, severe respiratory infections, or intubation for anesthesia. That’s why some people first develop symptoms a long time after radiation.  When you know you have it you or your doctor can research the side effects of any planned medical treatments and decide whether the risks are worth it. I was supposed to have surgery on my other breast to even things out but I would rather be lopsided than have my breathing get worse.  If I had another life-threatening problem requiring general anesthesia I might have to take the chance and live with the consequences.

      Exercise, healthy eating, and having a pulmonologist who is up-to-date on RIPF is the best way forward.  It’s wonderful to be able to connect with others in the same boat on this forum since we are a small subset of both cancer treatment and ILD.

       

      • #32993
        Anna Jones
        Participant

        Margaret, Thank you so much!  You’ve explained so much, so very clearly.  You have summarized it all so beautifully.  I didn’t know about the risk with intubation for anesthesia.  Important to know.

        Now I’m thinking I really might need that CT scan, and not put it off.  I did have COVID (had Paxlovid which helped tremendously) so maybe I need to see if there was any exacerbation.

        Thanks again for all your info and time!  Much appreciated.  Take care all.

         

    • #32994
      Natalie Mondor
      Participant

      Thank you Anne, Anna and Margaret for sharing. Invaluable information for all of us.
      Natalie

    • #33006
      Anna Jones
      Participant

      I got this in my email today from the Pulmonary Fibrosis Foundation:

      PFF is sponsoring a PFF Disease Education Webinar on Progressive Pulmonary Fibrosis:

      “What Patients Need to Know” on Sept. 14 at 1 pm CT

      Addressing the progression of PF in patients with interstitial lung diseases (ILDs) other than IPF (like radiation-induced pulmonary fibrosis)

      Speaker: Internationally recognized ILD expert Dr. Anna Pololanczuk

      To register for the ILD Day webinar for for more info about ILD, visit

      http://www.ILDDay.org

      I don’t think I’m allowed to cut and paste the original email, so I just wanted to make sure we all had the web address.  I am so curious to hear what Dr. Pololanczuk has to say about RIPF.

      All my best to all of you.

       

      • #33021
        Natalie Mondor
        Participant

        Anna,

        Thanks for the link. It seems that they also post the webinars on the site afterwards.
        I’m looking forward to finding out more about ILD.

        Natalie

        • #33044
          Anna Jones
          Participant

          You’re welcome.  I’m glad to know they will post it on the site afterwards.  Thank you for that info!

    • #33011
      Margaret
      Participant

      Thank you for the information, Anna.  It’s good to see that someone is discussing ILDs other than IPF even though they are less common.

      Margaret

    • #33038
      Craig Brennan
      Participant

      Hi Anne;
      I too am in my senior years (74) to be precise, I too am inflicted with IPF and I too have recently been treated for lung cancer with radiation. This recent treatment with radiation has brought on an extreme exasperation to a point that just walking 50 feet has me gasping for breath. With this said I would say you definitely belong in this forum, good luck and always keep faith.

    • #33108
      David Reno
      Participant

      I have been told My IPF is rad.& chemo. related. I am 69, I was 22 when treated for Hodgkin’s. When I asked how that was posable I didn’t get much of a answer, so not sure how true it may be. If it is true, I have no complaints, that treatment gave Me a lot of years.

      DJR

      • #33109
        Natalie Mondor
        Participant

        David,

        In my experience, doctors don’t usually talk about the long term effects of radiation or even know when the effects might take place. I think that is more recent. Using myself as an example, I had radiation for left breast cancer in 1984 and then lung cancer in the left lobe in 2009. Then the doctors said they didn’t know what caused the lung cancer (I had no risk factors), and disagreed with the suggestion that radiation was the cause. Fast forward to  the diagnosis of pf in May 2022, that the pulmonologist says was most likely the result of the radiation from 1984. Like you I am grateful for my life. I just wish I had had some warning, so I would have sought medical attention earlier to have  a better prognosis now.
        Be well and thanks for posting

        Natalie

Viewing 17 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account