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    Posted: Sep 08 2011 at 12:35am
Ughh..  I don't even know where to start.

I got sick about a month ago.  Coughing like I've never coughed in my life, all over, whole body cough.  I had fever most nights of 100, went through 3 rounds of antibiotics and am FINALLY feeling better.  I had a chest xray the 23rd and my oncologist didn't see or say anything about it.  I told him I felt like I needed more antibiotics, that I wasn't fully over the bronchitis, so he gave me another z-pack.  Now speed ahead to a week ago today.  I get a call from onc's office saying they want a PET because the radiologist saw what looked like pneumonitis.  Ok.  PET was Friday.

Each and every day, my cough has improved.  I was waking every 15 minutes to half hour at night coughing my head off.  I'm finally sleeping all night, only waking once or twice.  I can talk without coughing (couldnt do that 2 weeks ago) and laugh without coughing.  I'm telling you, it was a cough like I've never had in my life.  It's also productive. 

The report summary says "Significant hilar and mediastinal adenopathy as described in the body of the report.  There are multiple hypermetabolic bilateral lung nodules.  These findings are metastatic. 

I guess I'm just hoping the findings are WRONG.  That somehow the results can be from all the infection of the bronchitis and pneumonitis.  Or maybe I had that on top of the mets?  I don't know.  
Onc says biopsy now to make sure it's still TNBC and then decide on a tx plan.  

I've sent a request to MDA Texas for Dr. Gonzalez.  I feel like I have to have this biopsy in the morning and start chemo in the afternoon.  I hate feeling like I have ZERO time left.  OH!  And I have this "rash" on my left chest around the mastectomy scar.  I can't understand the garb on this report but it says "There are small hyperactive foci in the region of the left axilla and left subpectoral space representing metastatic nodes."  

I don't know what to do besides start with the biopsy and I don't know if I need to let MDA do that or just get it done here and take the results with me??

I'm overwhelmed.  Help!!

-Kim
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 1:59am
Kim, I'm so sorry to read of your current status. I absolutely empathize with your feeling of needing to start attacking this NOW. I cannot offer any wise, medical advice - perhaps those who can, will be along soon with that advice.

(For me, I'd do both - start whatever regimen your Onc. Suggests - and still peruse th MD Anderson route.)

What I can, and will do, is send prayers for a successful outcome, whichever route you follow.

Best wishes,

DeborH.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
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9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 7:44am
Kim,

I'm still shocked and saddened at hearing your news.  I couldn't sleep last night thinking about what you're going through now.  If you get the biopsy here, will it be at Siteman or locally?  Can you get into MDA quickly?  If so, maybe have the biopsy, scans and consult there.   You know we're here for you and will help you anyway we can. 

Kim - here are some of the clinical trials for TNBC that I pulled up for Missouri.

http://www.clinicaltrials.gov/ct2/results?term=triple+negative+breast+cancer+and+Missouri&recr=Open

Another clinical trial using Abraxane With or Without Tigatuzumab in Patients With Metastatic, Triple Negative Breast Cancer

http://www.clinicaltrials.gov/ct2/show/study/NCT01307891?term=triple+negative+breast+cancer+and+Tigatuzumab&rank=1

Sending my love,
Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 9:02am
Kim
I am praying that this is an inaccurate reading. Stay the course.
Love,
Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ann u Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 10:25am

Kim -

Darn it!!! 
 
But with that, let me tell you that I also had routine follow-up PET scan last December, about 1 year after my second occurance.  It showed some spots on my lungs, which the report could not definitively rule out lung mets because of my past history.  Reading the report is a scarry thing because the radiologist has to cover his a** because of your past history.  I had a chest CT done, and was referred by my oncologist to a cardio-thorasic surgeon. 
 
A few days after the chest CT (which also showed the spots in my lungs), I developed the most horrible cough I had ever had.  My oncologist put me on antibiotics, jumping up and down because she was happy I probably had pneumonia.  I coughed and coughed and coughed some more (and coughed up phlem that would fill a gallon milk jug) over the next two months - it seemed to go on forever.  The cardio thorasic surgeon wanted to follow me closely and keep doing chest CT's - and as long as the spots were presenting as the same size or smaller, she was hesitant to do a biopsy.  They continued to decrease in size. I finally had my third chest CT in July, and the spots were all but gone, so she sent me on my way to "enjoy life".  But I lived through 6 months of wondering if I had lung mets.
 
So I guess I'm trying to give you a big hug and tell you that until you have that biopsy, you don't know for sure.  Grab onto that hope - I know it's hard not to go into that dark place in your mind.
 
Ann
8/06: IDC 1cm, 0/9 lymph nodes, lumpectomy, Mammosite radiation, 4 x A/C
5/07: BRCA1+ (5382insC)
11/09: IDC 3mm, double mastectomy w/reconstruction

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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 10:44am
wow Ann
That was uplifting to read.
Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 12:33pm
As I told Kim on the phone, I'm with Ann in trying not to panic until a positive biopsy comes back.  Like Ann, my most traumatic false alarm was lung nodules in a scan that turned out to be nothing.  It could be infection, or radiation damage, or both.  It could even be tuberculosis.  You won't know for sure until you get that biopsy back.  Deep breaths and lots of ativan.

love you,
d

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 2:06pm
Kim,
I am so sorry that you are going through this. I hope that it isn't mets and Ann and Denise's stories leave hope. Praying for you.
Janet
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 2:12pm
Originally posted by Pink Warrior Pink Warrior wrote:


The report summary says "Significant hilar and mediastinal adenopathy as described in the body of the report.  There are multiple hypermetabolic bilateral lung nodules.  These findings are metastatic. 

I guess I'm just hoping the findings are WRONG.  That somehow the results can be from all the infection of the bronchitis and pneumonitis.  Or maybe I had that on top of the mets?  I don't know.  
Onc says biopsy now to make sure it's still TNBC and then decide on a tx plan.  

I've sent a request to MDA Texas for Dr. Gonzalez.  I feel like I have to have this biopsy in the morning and start chemo in the afternoon.  I hate feeling like I have ZERO time left.  OH!  And I have this "rash" on my left chest around the mastectomy scar.  I can't understand the garb on this report but it says "There are small hyperactive foci in the region of the left axilla and left subpectoral space representing metastatic nodes."  

I don't know what to do besides start with the biopsy and I don't know if I need to let MDA do that or just get it done here and take the results with me??

I'm overwhelmed.  Help!!

-Kim


Kim,

Just my 2 cents.  Unless you can get into MD Anderson next week, maybe get it biopsied locally.  Keep the appointment with Dr. Gonzalez scheduled for MDA and if the biopsy turns out positive for mets, then you'll be able to see Dr. G right away and work on a treatment plan.

Try and take deep breaths.   Also Ativan around the clock!

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 2:14pm
Kim,

So, so sorry to hear of your illness and this latest fight you are up against. Ouch  Oh, how I hate this cancer! Praying that the results will be better than they seem right now and the treatments will kick out this sneaky beast once and for all! Sending cyber hugs your way.  

Love and Peace,
Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 2:23pm
Just had the image disc overnighted to my surgical onc in STL.  Hopefully I'll be in for a biopsy next week.  If she can't get me in quickly, I'll have it done here.  

Not sure how dangerous lung biopsies are, I'd just feel more comfortable having it done in STL.  They've done all of my pathology in the past.  
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 8:11pm
Kim, I know how you are feeing right now as I'm still reeling from my recents mets diagnosis.  BUT, it sounds like you still have some hope of a negative biopsy.  In any case, just keep your head around staying as well as you can while waiting for a cure. 
Prayers for you during this difficult time.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katastrophe Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2011 at 9:46pm
Bloody Hell Kim, Here am I sitting here with the worst cough and snotty nose feeling sorry for myself, but I will take it over whats going on with you any day. Man I was complaining because everytime I cough I pee or (aheemmm) pass wind and thought it couldnt get much worse than that ... I am so sorry that you are going through this.
 
I am still waiting for results from biopsies taken yesterday from lumps on my chest wall, but doc thinks everything is fine. However the stress of the past few weeks have been hell just waiting to get it seen too. I know things seem grim at the moment, but as Denise and Ann said, try not to put the cart before the horse just yet (easier said than done I know) I will gladly give up my crown for you ... please god let this be a false alarm.
 
Speaking of horses ... did you know that they can't vomit???? Go figure (please let me feel a smile cross your face)
 
Take care I am thinking of you lots luv Kat xxx
Age 49. Stg2 gr3 19mm lump in L/br 1 lymph node in L/br 3/14 lymph nod under left arm full clear bil/mast 6rds Chemo 3wkly 25rds Rad 18rds of Avastin finished treatment on 19th August 10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 8:06am
Kim - I am hoping with all my heart that this is a false alarm. I really hate this for you and ever since I read your post, I've just been thinking about you nonstop. Tell yourself that those thoughts about how much time you have left are liars. When I got my met diagnosis in May, all I could think about was "How much time do I have?" But somehow, someway those thoughts are not as dominant now and I have brief beautiful moments of true hope that I am going to be here for quite some time. 

I was like you, too, in that I wanted to start treatment YESTERDAY! I started on the treatment my doc recommended and then went to see Dr. Gonzales about a month later. 

Praying for you and for your family.

Much love,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 1:06pm
I slept like a BABY last night.  After having zero sleep Wednesday night, up all night worrying about my children.  

I woke up today with a renewed sense of hope.  Each day this cough gets better.  It's still productive, but better.  I can't describe the coughing I did during the weeks prior to the PET scan.  It's not an exaggeration when I say I coughed every 15 minutes and sometimes more frequently.  I couldn't eat, talk or sleep for coughing.  I ate ice to try and numb my throat to keep the tickle away.  I laid in my recliner night after night with fever of 100 (just high enough to make you feel like crap) and wonder WTH was wrong with me.  Whatever it was took 3 rounds of antibiotics to kill.  Constant, deep, all over body coughing for 2 solid weeks.  OMG what a nightmare.  I woke up twice last night (once because Beth lost her baby doll's bottle in the bed and it was urgent we find it at 3AM) and once because I had to cough.  ONCE because I had to cough.  I slept 12 hours, waking twice, only to roll back over and go back to sleep within minutes.  

I've been in contact with my oncological surgeon almost daily.  Especially since the PET results came back.  I asked my onc if HE thought the PET could be false positive because of the infection I'd been fighting and he didn't seem to think so because of the "timing" being right for mets.  (GRRRRR)  That burns my ass.  Really??  It can't possibly be ANYTHING else because I'm 2 years out from original dx?!!   My oncological surgeon says "If there are hypermetabolic nodules, then biopsy is the next step.  However, all of this can be due to reactivity from the cough and upper respiratory stuff that has been going on." 

Of course, she hasn't seen the images yet, she's only going on what I was able to tell her from the written report.

Thank you all for your words of wisdom and support.  Laura, those thoughts ARE liars.  Each day brings new hope. 

xoxo to all.

Kim
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 6:37pm
Kim - so glad you are feeling better!! Will continue praying that your biopsy will be negative!
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 7:16pm
Hi Kim, 
Glad to hear you were able to sleep last night and awoke with a renewed sense of hope.  Still praying and hoping for the best for you too.  

I just stumbled on a writing today by a TNBC survivor who was in remission for 3 years after her fourth bout with this disease at age 44, at which time she had lung mets and a cancerous lymph node. She was also BRCA 1 and 2-.  So, even if it is mets, and I use a very strong IF here, none of us ever knows how much time we will have, but on the other hand, we could be here much longer than we ever imagined.  

Love, Peace and Hugs,
Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Allison Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 9:52pm
Kim,

Hoping and praying that this is just a false positive. This stuff just sucks!!! 

Allison
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2011 at 9:59pm
Kim:
 
Just wanted to say that I too am leaning towards Ann's post, as I have read so many stories just like hers (and yours) regarding the lungs, and they did in time disappear.  I'm just going to remain positive for you in that this is what it will be for you as well.  Stay strong, dear sister, and know that we are all praying and pushing for a good outcome.
 
Linda
 
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Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2011 at 12:19am
Kim,
It sounds like whopping cough.
Sending prayers your way for healing and a good report.
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