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 what the heck is pneumonitis?????
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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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