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 what the heck is pneumonitis?????
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REBECCA ELLEN

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what the heck is pneumonitis????? - Wednesday, May 06, 2009 12:46 AM
Radiaiton and oncologists are studying cat scan from my emergency room visit in little beach town in Delaware -- I've posted on this under herceptin complications - looks like it is now a complication from the Herceptin on the heart and the radiation on the lungs.
Lawsy me -  I am not all that worried (have done too much of that - doesn't seem to help) - but am still short of breath - nurse told me when radiation Doc looked at copy of scait IF it is pneumnitis they treat it with steroids.
I've looked up some stuff - couldn't find a lot --anybody know anything?
thanks pals.
B
BECKY - age 57
DX Dec. 08
16 tax/carbo/herceptin
Mast July 28 08 - Blood supply cut off to wound
Healed in Oct. 08
Started mapping for rads but found another lump
Second surg. in Nov 08 - dev. infection - healed Jan. 09
26 rads - 5 boosts (will finish March 3 09)
Est +   Her2nu+
Herceptin and Femara

bungalow7

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 1:11 AM
My rad onco warned me about radiation pneumonitis as part of my patient education pre radiation.  It's an inflammation of lung tissue.  In fact, any medical term that ends in -itis is inflammation of whatever body part is the first part of the word. 

The rad onco said it usually appears 6 weeks to 6 months after treatment ends and has very clearly defined straight lines on a chest x-ray.  Inflammation caused by infection is more blob-like in shape on the x-ray.  Because it's not caused by infection, it's treated with steroids to bring down the inflammation instead of antibiotics to kill bacteria.  If it's anything like my recent bout with panniculitis, you should be breathing alot better after just 1-2 doses of steroids.

Here's a link that explains a bit more and written in non medical language - http://www.medicinenet.com/script/main/art.asp?articlekey=8101

Hope that helps.  Seems pretty easy to treat, I just think if the radiologist reading your films hasn't seen it much, they kinda tilt their head to the side and go "huh, that looks weird" when they see the rectangular shape on your lung.

I'm curious why the ER did a cat scan and not a chest x-ray?
Dianne
41 yr old at diagnosis
dx IDC triple negative 12/1/08
lumpectomy & node dissection 1/5/09
tumor size 8mm, 0/18 nodes
A/C started 2/3/09
Last A/C 4/7/09  woo hooo!!
33 rads with 5 boosts - over, finally

I refuse to waste a good day today worrying about a possible bad day in the future.
Tricia Keegan

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 7:09 AM
Becky,

I was told a year after rads I had radiation fibrosis, which is basically lung scarring from untreated pneumonitis although in my case my years as a smoker had left scarring anyway.

I don't see any relation to herceptin/lung damage which your onc mentioned and as your mugga was okay you're wise not to panic about this.

I think NE Jo suffers or has had suffered from this in the past although could be mixing her up with someone else.

Found this link which explains it in simple terms.

http://www.medicinenet.com/script/main/art.asp?articlekey=8101
(Lol, just noticed Dianne already posted this link for you!)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
Jennifer Mishe

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 7:48 AM
I struggled with shortness of breath after rads for 8 months until my PC took me seriously and ordered an xray.  My symptoms came sharply into my doctors focus after I almost did not come out of the anethesia after my hysterectomy.  My PC called it radiation induced asthma, another doctor referred to it as pnuemonitis.  I was put on Advair and given an inhaler and had almost immediate relief.  My energy level came back up and my doctor explained that because I had gone so long with the shortness of breath, there was not enough oxygen getting through my bloodsteam, resulting in anemia and exhaustion.  I can't describe the difference those meds made in the quality of my life.  I was on them for about 7 months.  I have occasional shortness of breath but only when I have a hot flash or get super hot.  Hopefully a few rounds of steroids will resolve the issue for you.
Jennifer
DCIS
lumpectomy 5/02/05
32 rad tx comp 7/07/05
tamoxifen
comp. hysterectomy 4/04/06
Paducah, KY
NE Jo

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 8:54 AM
Wow--Tricia you are an oracle of knowledge!  Yes, its me with a hx of pneumonitis, although it was a different type, caused by exposure to molds.  What the others have posted regarding links & treatments is right on.  Main thing is to get early diagnosis & treatment before the inflammation causes fibrosis of the lungs.  Its a known side effect of radiation, so the docs do look for it.  For those who are wondering, if you have chest symptoms and/or a relentless dry cough that just won't go away, it needs to be ruled out.  I think the radiation oncologists know what to look for, but in my experience, not all pulmonologists.   Let me know if I can help with hints for symptom management.
 
Jo
NE Jo
Dx 4/3/07 @ 52 yrs
Stage IIIA Grade 2/3 IDC on left; DCIS on rt  
Bilateral mast. 6+/18 nodes 5/22/07
BRCA 1 & 2 -; HER2-
ER & PR +
4 dd Adriamycin/Cytoxan
4 dd Taxol
33 rads done 12/24/07
Femara started 10/24/07
Persistant elevated CA 27.29 since 8/08
JulieS

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 10:50 AM
Oh my gosh....I think I had this but my pcp's office dx as having broncitis!   Three months after I finished rads I developed a terrible cough.....scared me because my mom had lung cancer when she died.   The antiboitcs didn't help at all so back I went, they did a chest x-ray and the dr gave me a sample inhaler and told me to call my rads onco because he thought it was caused from rads.  The inhaler  had steriods in it, it did take a while but did go away.   My rads onco said the broncitis wasn't caused from rads but if it came back to call and set up an appoinment to see him.
What makes me think this is what I had as I have never had broncitis before or since! I learn sooooo much here! This is really a special place!  Thanks you sisters!

Hope and strength,
Julie S

Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-
NE Jo

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 2:07 PM
I hadn't posted this previously because I thought so few might be affected, but since we have a pneumonitis thread going it seems relevant.  I have extensive scarring (oxygen dependent) from pneumonitis, also known as interstitial (between the layers) pulmonary fibrosis.  I have been running high levels of CA 27.29 which my onc thought could be due to my lungs after a clear PET scan. 
 
I just googled lung & CA27.29 and found this link: www.ncbi.nlm.nih.gov/pubmed/19073511 
a very small study that found a correlation in women with breast cancer and pulmonary fibrosis having elevated CA27.29. 
 
 A similar study : www.ncbi.nlm.nih.gov/pubmed/8138663 found a correlation with elevated CEA.
 
I emailed the author of the CA27.29 information who urged that I continue closely monitoring the CA27.29, but acknowledged it may well be the lung disease causing false positives in both tests.  The explanation of it was way above my head, but I think it meant the excess mucous production in the lungs throws off the test.  Don't quote me on that one, just know there's a possible correlation .
 
Sooo girls with pneumonitis--if your levels of CA27.29 or CEA show up elevated, don't totally freak until you get your lungs checked too.  As others have said, it won't clear with antibiotics.  It takes steroids, and supplemental oxygen may be necessary at least temporarily because the lungs don't work right when they are inflamed.  This reduced lung function is what causes the terrible fatigue, anemia, etc. 
 
Keep the faith,
Jo
 
NE Jo
Dx 4/3/07 @ 52 yrs
Stage IIIA Grade 2/3 IDC on left; DCIS on rt  
Bilateral mast. 6+/18 nodes 5/22/07
BRCA 1 & 2 -; HER2-
ER & PR +
4 dd Adriamycin/Cytoxan
4 dd Taxol
33 rads done 12/24/07
Femara started 10/24/07
Persistant elevated CA 27.29 since 8/08
Jennifer Mishe

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 3:11 PM
What I found interesting is that I had complained about shortness of breath to my rad. onc long before I was finished with rads.  He pooh-pooed the idea that it could possibly have anything to do with the rads and set me up to see the psychologist as he said he thought I was having anxiety attacks.  It took several other symptoms adding up before my PC decided to take action on his own, and I am so grateful that he did.  I now believe the radiation oncologists office were more afraid I might launch a lawsuit so decided not to honestly deal with my concerns.  I have learned since to make certain my PC is one of the first to hear that I have symptoms of anything post treatment related.  He has been much better at addressing them. The links you provided are really informative and I have printed them off as my markers have elevated over the last two years, still within normal range but elevated from what he would expect them to be.  Thanks for posting that information.
Jennifer
DCIS
lumpectomy 5/02/05
32 rad tx comp 7/07/05
tamoxifen
comp. hysterectomy 4/04/06
Paducah, KY
Tricia Keegan

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 5:13 PM
Not an oracle of knowledge NE Jo but thanks for the comment:)
Just recalled a conversation we had regarding this some time ago.

This is great info and thank you, would you mind if I move this to the rads thread when it slips off sound off??
I think it's good for people to be aware this can happen.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
NE Jo

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Re:what the heck is pneumonitis????? - Wednesday, May 06, 2009 8:49 PM
Tricia--feel free to move my posts to the radiation thread, if you like.  Too bad my research is not as obscure as I thought.  Its interesting that with my prior history of hypersensitivity pneumonitis, I did not get radiation pneumonitis.  I remember when the radiation onc was explaining it to me, I thought it would be a slam dunk.  Go figure.  Karma, maybe?
 
thanks for all you do,
Jo
NE Jo
Dx 4/3/07 @ 52 yrs
Stage IIIA Grade 2/3 IDC on left; DCIS on rt  
Bilateral mast. 6+/18 nodes 5/22/07
BRCA 1 & 2 -; HER2-
ER & PR +
4 dd Adriamycin/Cytoxan
4 dd Taxol
33 rads done 12/24/07
Femara started 10/24/07
Persistant elevated CA 27.29 since 8/08
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