[Anna Jones]

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.

 

[Anna Jones]

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.

[Anna Jones]

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

[Anna Jones]

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.

 

[Anna Jones]

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

[Anna Jones]

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.

 

[Anna Jones]

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.

[Anna Jones]

PFCareGiver,  I recently found out  from my GP that I have collapsed nasal valves – which has been making breathing more difficult and causing nasal drip.  It came on slowly.

Try this test – buy some of the nasal strips (ex: Breathe Right Nasal Strips) that people use to open up their nose while they sleep and to prevent snoring and have your mom try them.  (Be sure the area you attach them is not covered in makeup or face oil.)  It this immediately helps (it did with me!) your mom may have collapsed nasal valves.  I had never heard of this but after looking it up it is vey common and sometimes just due to old age.  Good luck to you all.