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Radiation caused COPD 13yrs later

LeesP
Posts: 1
Joined: Feb 2011

I am a surviver of Hodgkins 13 1/2 yrs ago. had chemo and radiation.
Have been fine with little side effects abut all in all have a great life.. ( theres hope for everyone out there!) I was just diagnosed with emphazyma((COPD) from my radiation treatments, im a non smoker. Dr having hard time because my case is different from the normal copd people. Hs anyone ever had this or has heard about a survivor having this.. I knew they said it could be a possibility far down the road but to me this isnt what i pictured. looking to find a good dr that would treat me with understanding of this matter. also allergies got worse after my treatments and i am allergic to the normal albuteral treatments..
any insight would be appreiciated.
Still doing well..still enjoying my family.. again- there's hope.. DOn't ever loose that to any new diagnosed people taht may be reading this! :)
also a heavyness comes peridically on the side of my chest up top left side. any ideas??
anyone have it??

Catherine_Hicks
Posts: 1
Joined: Jun 2011

I just googled COPD and Radiation and your questions came up. I was just diagnosed with COPD with similar symptoms, and the heavy chest. I went through chemotherapy and radiation almost twenty five years ago for Hodgkins Lymphoma. I don't think I was told about the possible chance of COPD, but they may not have known back then.

I do not know anything yet that could help you, but I pray you found the treatment that works best for you. Please let me know how things are working out for you.

bluerose's picture
bluerose
Posts: 1104
Joined: Jul 2009

I had non hodgkins 25 years ago and total body rads and have been fighting respiratory issues for years after it all. My docs were leary of saying it was treatment induced, as they were with lots of my side effects, but one by one they are seeing it in more patients. Sometimes we just don't present in the same way others would who didn't have our treatments.

I was diagnosed with chronic respiratory infections but still have a recurrent phlegm issue and every now and then I cough up a 'plug' which is accumulated phlegm that doesn't move along so sits in one spot til it gets infected then you have to go on antibiotics. Over the years it has gotten a bit better but it's still a pattern for me.

One respirologist said that what happened is that the radiation burned off the cilia in the respiratory system so the body couldn't move phlegm along and out as it should but over the years some has grown back. I used to get constant infections too and he said it was cause the cilia in my nose was burned off in radiation too so again no filter for bacteria flying up my nose. Made sense to me. I could never feel nose hairs for years but now I can just start to feel them and sure enough the infection rate is less, still there but less.

Like you said though, for those newbies who might be reading this, keep the faith, no two people are the same in cancers or treatments and today they are trying to limit exposure way more than back when I was treated.

All the best and remember, you aren't alone Lees, many of us have the same after effects, you can tell that first doctor that - it isn't just you.

Blessings,

Bluerose

nlmy
Posts: 2
Joined: Feb 2013

Hi! I had Hodgkins in 1973...I was 12 years old...I had lots of chemo and when masses were found in my lungs in 1974, I got lots of radiation.  I now...40 years later...have been recently diagnosed with COPD.  It is frustrating as this is something I least expected to get.  I just joined the Cancer Survivors tonight as I am trying to learn more about COPD and the other cancers survivors have had to deal with.  I had bone cancer (MFH) in 1997 and thyroid in 2011.  Basically I am feeling tired.  Wish you all well. Take care.

Karen O'Brat
Posts: 1
Joined: Apr 2015

I was diagnosed in 1979 with Hodgkin's IIa at the tender age of 12, AND 126 POUNDS.  I had aLL the tests possible including a lymphangiogram, laparotomy.  I was alse diagnosed ae being hypochondriac which was proven incorrect by xrays in the middle of the night which showed a floating pneumonia.  50 radiaiton treatments later,  I lost my hair at the base of my scalp. I AM STILL WAITING FOR THAT TO GROW PACK, weight  down to 90 pounds at the modelesque height of 5'9 and radiation burns.  I had to beg for a pair of jeans and shorts for the summer as we moved cross country to SASK FROM ONT.  And I was sick, puked and moaned and groaned for months. Was told by the doctors I wasn't going to be ill.  I proved that theory wrong.  I was later told by the medical  personnel that I didn't get nearly as sick as other patients.  I FINISHED GRADE 7 WITH STRAIGHT A's DESPITE A HORRIBLE ATTENDANCE RECORD AND HAVING A PAIL WITH ME IN THE CLASSROOM.  Reverse psychology 101 on  a 12 year old with cancer.....ya not cool my books.

Now what 35 years later I am still waiting for my hair to grow back, the radiation burns to stop being soo silky smooth.  The  COPD issues, Bronchitis twice a year.  And favouriste side of effect the, Cardiac disaster that I LIVE EVERY DAY. Take drugs to keep my blood thin enough for my artiifial valves, take huge doses of meds that will hopefully keep my heart from jumping out of rhythm to confuse my pacemaker.  Sleepless nights, listening to my valves beat and wondering if we are in Afib again.   I have already had the paddles 5 times.  I think my welcome is worn out in that department.  Ans something to always go sideways to keep the docs in check.   It isn't going to be easy to watch my life get slower and slower as I lose energy and interst that may over exert me and leave me tired for 3 days. 

The Present :

Wind traps me,extreme cold paralyses me.  And I learn to work around my aches, pains and fatigue.  Makes it hard to commit to things in the future.   Traveling is a travel.  One day travel, rest hopefully not to tired and can do something.  Have enthusiastic friend along to drive.

Check out the sites, point the camera, look at the beauty of simple things, capture those moments and be able to enjoy them for many look sees in the future.

Highlander56's picture
Highlander56
Posts: 16
Joined: Aug 2012

LeesP & all:

 

In 2010 I was dx with chronic asthmatic bronchitis. I've been on daily inhaler since. Also dx with aortic and mitral valve disease same year. In November, 2014, aortic valve found to be severly diseased.  December I underwent successful aortic valve replacement. Mitral valve remains, for now, modertly diseased. Radiation the cause of diseased lungs and heart valves.

Glen

1987, HL: Radiation; 1989, HL: Chemotherapy; 1991-1996, CLL: Non-traditional treatment

Amy C
Posts: 1
Joined: Aug 2016

Hi everyone, 

 

I so appreciate the thread here as I was just diagnosed with COPD on Friday, the news given to me by a nurse while my oncologist is on vacation (therefore, I can't find out any more info right now). I have never smoked. Was treated for Hodgkin's in 1990 with 5 chemotherapy treatments and 6 weeks of radiation to my chest and abdomen. Basically, I don't understand what this diagnosis means. Moderate Obstructuve Lung Disease, which when I google it Stage 2 COPD comes up. I guess that's a fancy phrase for emphysema? I exercise reguarly and lift weight, I eat healthy, am in great shape, have had a great life. I noticed at Bootcamp that I was starting to feel tired. Light headed, dizzy, hands numb when running. It appears that radiation to the chest may have resulted in some heart damage, a moderate to severe mitral valve regurgitation (as Glen mentioned above), which I was diagnosed with 2 yrs ago, and now COPD. Anyway, just wanted to share this in case other Hodgkin's survivors are having the same issues. It makes me feel less crazy and less like a hypochondriac to read that other Hodgkin's patients are having these issues. As LeeP said above, I also periodically have a heavy feeling on the left of my chest. I've had inhalers for years to help with exercise, but was never diagnosed with anything other than exercise induced asthma, which was probably a mis-diagnosis. I'll start using my inhalers now more frequently!

Thanks for listening!

Amy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1864
Joined: May 2012

Welcome Amy, and I am sorry regarding your COPD diagnosis.

Your case will take a bit more investigating on your part, but the cause of your COPD may never be discernable.   What chemo drugs did you receive ?

The most common HL treatment is ABVD. Within ABVD, two drugs CAN cause breating issues: Bleomycin can cause lung toxicity and even fibrosis, but it is unusual for there to be a delay in Bleomycin damage being detected; it is usually immediate, or at least with a few months.

Adriamycin can cause breathing difficulties due to heart damage, which mimics congestive heart failure (CHF). This damage is often delayed for years (some estimate that the delay can be as long as ten years).  But it is hard to imagine that CHF could be mistaken as COPD.

Radiation can also, definitely cause breathing issues, especially when combined with chemo.

WHO diagnosed the COPD ? Ideally, it needs to be a Pulmonologist (lung specialist).  If it was not a Pulmonologist, I recommend you go to one to confirm and further investige your problem more fully.

I was diagnosed two years ago with non-allergic asthma and fibrosis by a Pulmonologist. My family doctor and oncologist had missed both.

 

max

po18guy's picture
po18guy
Posts: 339
Joined: Nov 2011

...to what your life expectancy would have been without treatment (or trying "alternative" treatments). Sadly, we trade a large, dangerous disease for smaller, slower ones. I find it more edifying to live each day as the blessing it is, rather than wondering about the "what ifs" in life. Max has covered it very well,and our job now is to live our lives to the best of our capabolities. I have had some rough spots recently, but overall, I am delighted to be anywhere.   

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