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

REBECCA ELLEN
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Re:what the heck is pneumonitis????? - Thursday, May 07, 2009 3:06 PM
THANKS EVERYONE!!!  All this info has been enormously helpful.  I have talked to two of the radiation oncology nurses but they do not have an answer for me yet (guess the head doc is out of office?)  they should have rec'd the cat scan from ER via oncologist by now and I am getting irratated that I'm not being treated. I have no doubt it is pnuemonitis (now) -- oncologist told me when she saw the Cat it was like a perfect square - (ER doc not familiar, I'm sure, - small town - small hospital but I can understand now why he thought it was pneumonia.)
I really liked my radiation people when I was going there - but before and after they are very unresponsive and hard to reach.  This is par for the course.  I am ready for some streroids!!!!!
Trish - I think it is good to move this to radiation --- i had never heard of such so was flailing around trying to figure out what it was.  Was also not told of cording - I think this radiation group does not want one to imagine they have someting as soon as they hear about it - but I think it is crazy not to have ANY INFO on something that seems very common.
This board is amazing -- more info here than any hospital in the world!!!!!
thanks thanks thanks
(pant, pant, pant !)
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


REBECCA ELLEN
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Re:what the heck is pneumonitis????? - Thursday, May 07, 2009 3:11 PM
Trish - fyi my mugga test did show some weakening - not dramatic - but enough for nocologist to hold the herceptin.  will have another mugga May 18 and I will learn then if I am start back on herceptin.  That will be the same time we decide what to do about the femara - I am hoping oncologist will recommend another one as after 5 weeks off my hands and bones feel a little bit better.  
These treatments are too much!!  I'm pooped from the whole subject and just want to get on with my life!!  (bout time I accepted this IS my life.....hahaha) /
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


Deb Allen
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Re:what the heck is pneumonitis????? - Thursday, May 07, 2009 6:44 PM
Daily, as I read when I can, I become more and more convinced that there are brilliant women and men out there, who when faced with something unexplained, resort to our own resources.  About 6 years ago, I was almost forbidden by my loved ones to research my disease, treatments, diagnosis, etc...out of their fear, not mine.  I was too sick and too weak at the time to argue.  I walked where I was pointed to, and did what I was told.  Now, I realize, and have been able to come to an amicable understanding with my loved ones, that for me, knowledge is power, and power is strength.

To that end, each post with more information about anything, is way more than we usually can obtain on a case by case basis from our oh-so-busy docs.  Komenville, and advocates such as you all, are making a heretofore impossible goal, possible.  Honest, true information.  Equals Knowledge.  Equals Power...

to make a difference



Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Tricia Keegan
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Re:what the heck is pneumonitis????? - Thursday, May 21, 2009 12:21 PM
Bump
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

Sister
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Re:what the heck is pneumonitis????? - Wednesday, October 14, 2009 11:57 PM
Hi there,
 
It has been over a year now since I finished radiation.  In fact, it was a year in July.  I still have soreness in my breast and no one can explain why.  The rad. onc. says it is scare tissue from the surgery and the surgeon says it is from radiation.  When I told them what each had said,  they both said, well, I guess it is a little of both.  It is sore when I check myself for lumps, you know when you press around.  Any suggestions on what it could be or if you have heard about anyone with this problem.  Thanks!
Lumpectomy 4-24-08
2nd. Lumpectomy 5-08-08
Radiation started 6-10-08
Finished Radiation 7-25-08
Indiana

JulieS
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Re:what the heck is pneumonitis????? - Thursday, October 15, 2009 2:58 AM
Sister,
I am 2 years + for finishing rads and my breast still aches sometimes.  I have a saroma, but when I ask my onoc about the acheness she said the same as yours.......scar tissue or from rads.  It may or may not ever go away.  I can live with it as long as I KNOW it isn't a recurrance.  I feel a little pain when I do my bse also, intrestingly enough when my oncologist does it it doesn't hurt.....I think I am searching so hard to find something (don't want to miss anything) that I push harder than necessary.

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-

Tricia Keegan
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Re:what the heck is pneumonitis????? - Thursday, October 15, 2009 6:17 AM
Sister,

I also still have this problem now and then, the area around the lumpectomy site is always quite hard too.   I've been told it's a little of both also but to be aware of any changes with it and if need be a biopsy would be done.
It seems to be fairly common I think.
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

Sister
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Re:what the heck is pneumonitis????? - Saturday, October 17, 2009 12:43 AM
Thank you Julie S. and Tricia for helping me!  You hear these things from Doctors, but sometimes just need some one else to tell you that also.  It is also nice to hear that someone else has had this or something similar.  There were 5 of us that went through rad. together and we did not know each other before then.  The hospital personnel said they had not seen women bond like we did.  We now have lunch once a month.  One of the 5 is dying with brain cancer. (She had breast cancer also) They have hospice with her now!  One is an older lady that has develped breathing problems.  Three of us had lunch the other day and we were all discussing our symptons.  Nobody could understand why I was having this soreness and  I was the one that sailed through radiation.  I say a prayer for everyone that has cancer every day.  Again that you.
Lumpectomy 4-24-08
2nd. Lumpectomy 5-08-08
Radiation started 6-10-08
Finished Radiation 7-25-08
Indiana

Tricia Keegan
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Re:what the heck is pneumonitis????? - Sunday, October 18, 2009 4:40 PM
Sister,

I'm glad you had such good friends to help you thriough, but sorry you now face losing one of them. No one knows why some of us recurr with distamt mets and other's don't.
I had a similar experience when my friend who had bone mets for three years suddenly developed brain mets.
It was tough on me, but she was so couragous and accepted her passing so much, she planned her own funeral and had letter's read out to her two little children left behind. She was only forty and there was'nt a dry eye in the church as you can imagine.
My best to your friend and to you, try to take it in your stride as you're able. It's hard, but we can take courage and a message from our dear sister's suffering liek this too.  xx
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

LuCinda
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Re:what the heck is pneumonitis????? - Wednesday, January 13, 2010 7:09 AM
Thank you Ladies for all the great information.It helps to know these things.My Radiologist told me that some of these problems could happen.I've just started Radiation......and I'm so glad I have all of you wonderful ladies with me.I still need to do some more reading about Radiation and it's side effects.
Keeping all of you in my thoughts and prayers,
Stay Strong,
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

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