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Stage IV - Lung Mets

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Forum Name: TNBC Metastasis/Recurrence Users
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Topic: Stage IV - Lung Mets
Posted By: Pink Warrior
Subject: Stage IV - Lung Mets
Date 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 100į, 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



Replies:
Posted By: Debris
Date 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
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs


Posted By: 123Donna
Date 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 - 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 - 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



Posted By: HappyGoLucky
Date Posted: Sep 08 2011 at 9:02am
Kim
I am praying that this is an inaccurate reading. Stay the course.
Love,
Karen


Posted By: ann u
Date 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



Posted By: HappyGoLucky
Date Posted: Sep 08 2011 at 10:44am
wow Ann
That was uplifting to read.
Karen


Posted By: dmwolf
Date 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.


Posted By: janet c.
Date 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


Posted By: 123Donna
Date 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



Posted By: sue
Date 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.          


Posted By: Pink Warrior
Date 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


Posted By: Barbi
Date 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.


Posted By: Katastrophe
Date 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.


Posted By: LauraT
Date 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


Posted By: Pink Warrior
Date 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


Posted By: Barbi
Date 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.


Posted By: sue
Date 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.          


Posted By: Allison
Date 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.


Posted By: LRM216
Date 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
 


-------------
Linda - diagnosed at age 62
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


Posted By: krisa
Date Posted: Sep 10 2011 at 12:19am
Kim,
It sounds like whopping cough.
Sending prayers your way for healing and a good report.


Posted By: TNinTN
Date Posted: Sep 10 2011 at 12:52am
Our thoughts, love, and prayers are with you.

-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11


Posted By: SagePatientAdvocates
Date Posted: Sep 10 2011 at 5:50am
Dear Kim,

I am so sorry very, very sorry to hear about your preliminary diagnosis. 

I think it is important to see a Breast Medical Oncologist soon at MD Anderson Cancer Center. 

It is difficult for them to give you advice, though, if you start on another chemo regimen and are actively on treatment. I am living through that now with a woman I am helping and now that she is off the trial she was on, MDACC is willing to give her their advice. So, if possible, if you can get in quickly to see them try to garner their advice prior to commencing chemo.

you have been, are and shall be in my prayers..

Steve




-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Lillie
Date Posted: Sep 10 2011 at 1:29pm
Dear Kim,
So sorry sweetie.
You are covered with prayer.
I am glad you were able to get a good nights sleep. I'm praying for the reports to be wrong.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: kidzrn
Date Posted: Sep 11 2011 at 8:52pm
praying your preliminary results are WRONG!!! I have had a lung biopsy and it wasn't that bad, really. Wouldn't volunteer for it without cause but with all most of us have been thru, not too bad. Of course they gave me some versed and fentanyl but I did have to be awake so I could breathe in/out and hold my breath when they wanted me to. If it still hurts when you are getting procedure, ask for more pain meds. My doc told me I could have had more...nice to know for future reference. On a mixed note; my biopsy was positive but 3 really large lymph nodes around the lungs were negative (full of previous infections that I was exposed to by my patients.) So hoping yours are from infections too!!! ((((HUGS)))) christi

-------------
christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11


Posted By: Pink Warrior
Date Posted: Sep 11 2011 at 8:59pm
GRRRR!!!!

Fever is back - 100.3 and I'm once again coughing up yellow phlegm.  I can FEEL the irritation in my bronchial area, like someone took a piece of sandpaper to it.  

What the heck is going on?!  Half a round of Augmentin and 2 rounds of Zithromax.  I've been on the upswing for the last few days or so and now this again??

Could I have had pneumonitis with bronchitis on top of it and there was just enough left over to cause me trouble again?  I'm guessing you can't have a lung biopsy with an active infection?


-------------
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


Posted By: Pink Warrior
Date Posted: Sep 12 2011 at 4:33pm
Went to see my GP today who gave me a bit more hope.  

She says I have pneumonia and thinks that's what I've had for the last 3 weeks.  She said the Zithromax just wasn't enough to clear it up.  I got her up to speed on the PET and she straight up told me "I believe the PET is lying". She said that none of my symptoms make her suspect cancer but all of them lead her to believe it's pneumonia.  

Dear God let her be right.   


-------------
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


Posted By: dmwolf
Date Posted: Sep 12 2011 at 5:29pm
Kim, that's so hopeful!  (What a strange life we are living to be happy about pneumonia.)

Did you find out whether they can biopsy soon or need to wait for the infection to pass?

love you,


-------------
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.


Posted By: ann u
Date Posted: Sep 12 2011 at 6:14pm
Kim-
 
Can your oncologist refer you to a pulmonologist?  Maybe he/she would wait until the crud in your lungs clears up, then do a chest CT (that's the route my oncologist took with me, although she referred me to a cardio/thorasic surgeon, knowing that if I eventually needed a biopsy on the spots in the lungs, she would already be up to speed). 
 
I'm feeling a sigh of relief for you (and I hope you are too).  This sounds so much like what I went through from January-March this year, although they think it was just a very nasty virus that took forever to clear up. 
 
If you can get a better look at the lungs with a chest CT, maybe you can avoid the more invasive biopsy. 
 
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



Posted By: SagePatientAdvocates
Date Posted: Sep 12 2011 at 7:24pm
praying it is not..donít even want to type it..

hugs,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Lillie
Date Posted: Sep 12 2011 at 7:35pm
Dear Kim,
What a hopeful post. With your immune system already compromised, to a degree, by all the chemo and radiation your've had this year it's no surprise that the regular pneumonia meds would not clear it. Praying you just need something with "more teeth in it" to fight the pneumonia; and that is ALL.

I also have our prayer warriors busy on the Spiritual Support site. We've got you covered with prayer.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: LRM216
Date Posted: Sep 12 2011 at 8:38pm
Never thought I'd be wishing pneumonia on someone, but I'm definitely pushing for that!  Keep strong, Kim.
 
All good wishes and thoughts,
Linda
 


-------------
Linda - diagnosed at age 62
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


Posted By: Pink Warrior
Date Posted: Sep 12 2011 at 8:46pm
Thank you all so much.

D, my surgical onc, who is trying to get the biopsy set up, said that the team will most likely want my pneumonia symptoms cleared up a bit first.  




-------------
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


Posted By: tninalabama
Date Posted: Sep 13 2011 at 11:32am
Here's to a good recovery to pneumonia and that will clear you up!
Pam



-------------
Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets

BRCA neg
5-FMC since 03/12
PET 04/12,no progression
Bone scan clear 06/12


Posted By: btstark2003
Date Posted: Sep 13 2011 at 4:58pm

Pink Warrior,

Read your posts and thinking of you.  Sounds like you have young kids - must be awful to be so sick with the pulmonary crap.  My girls are 9 and 12 and I am now undergoing chemo for a recurrence of TNBC.  I've been having headaches the past week and starting to be concerned about brain mets, so I understand what you are going through.  Who is your doc?  My med onc is Matt Ellis at WUMS/Siteman Cancer Center in St Louis and he is wonderful.

Beth



-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: 123Donna
Date Posted: Sep 13 2011 at 5:13pm
Hi Beth,

I'm from St. Louis too.  Who was your surgeon?  I had my rads at Siteman with Dr. Marie Taylor.  I hope the G/C get those nodes for you. 

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



Posted By: sue
Date Posted: Sep 13 2011 at 10:16pm
Kim,

Really good news! Continuing to pray for negative biopsy for you.  

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.          


Posted By: btstark2003
Date Posted: Sep 14 2011 at 7:01am
Donna,
My new surgeon is Julie Margenthaler. Hoping that G/C will shrink the subclavicular chest wall mass to a point that she considers it operable. At this point she doesn't think she could get clean margins.
Beth

-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: 123Donna
Date Posted: Sep 14 2011 at 7:48am
Beth,

Julie is Kim's surgeon also!  Keep us posted on how the chemo works and hope it shrinks it quickly.

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



Posted By: Pink Warrior
Date Posted: Sep 14 2011 at 1:55pm
Beth, 

(that's my 5 year old baby girl's name, BTW)  My oncologist is local here in southeast MO.  However, I have all of my pathology and surgery done in STL.  Julie is my surgeon and I'm telling you, she is hands down THE BEST.  I've never had a doctor work so hard in every aspect of my care.  

Could your chemo be causing your headaches?  

Mini Update on Me:

Got up with a better cough but a horrible sore throat.  While the cough isn't as "violent", it's very productive.  I was up at 5:30 this morning feeling like I was on fire, so Matt brought me a couple of Tylenol.  I didn't check my temp but I'm pretty sure I had a fever.  After stripping the blankets and turning on an extra fan, I was able to go back to sleep.  Got really sick about an hour ago.  Just felt weak all of a sudden and sooo nauseated.  Nipping on some crackers now and feeling a little bit better.  I've never had pneumonia before so I have no idea what it's like.  


-------------
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


Posted By: dmwolf
Date Posted: Sep 14 2011 at 2:08pm
Kim, you sound desperately ill with whatever this is.  Are you on antibiotics again?  I'm worried about 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.


Posted By: Lillie
Date Posted: Sep 14 2011 at 2:44pm
Dear Kim,
Are you staying hydrated? Having fevers can cause our bodies to lose more fluid than we realize. Being dehydrated can cause you to feel weak and nauseated. Also, if it gets bad enough, some people become delusional. This is just a thought. Also, are you on a new medication?

Sweetie, I'm praying you get to feeling better soon.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: Debris
Date Posted: Sep 14 2011 at 4:58pm
Kim, so sorry you are having this long battle. You are getting good advice from others, so I'll just send you healing thoughts and prayers. God Bless.

Deborah

-------------
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs


Posted By: Pink Warrior
Date Posted: Sep 14 2011 at 6:49pm
I just started a new antibiotic late Monday.  I'm taking double doses of Doxycycline for the first 3 days (today being the third day) and I'll start regular dosing tomorrow.  I'm also on a cough syrup that is loosening/thinning the phlegm.  I took a dose about 2 hours early last night before I went to bed thinking it would be better than missing a dose.  WRONG.  I was awake the first hour after I laid down doing nothing but coughing crap out of my lungs.  

Matt brought a Coke home for me on his lunch break.  I never drink sodas unless I'm sick to my stomach and it really did the trick.  I had about an hour and a half nap after the boys got home from school and I'm feeling somewhat human again.  I feel like I can cook dinner but I'll probably let Matt do it.  *giggle*

I've always heard you get worse before you get better so maybe I'll be on the upswing again tomorrow.  

xo


-------------
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


Posted By: btstark2003
Date Posted: Sep 14 2011 at 9:07pm
Kim,  Sure hope that you have a good night sleep tonight and that your fever goes away and little Beth sleeps through the night too!  THanks for the thumps up on Dr. Margenthaler.  I just hope she gets the chance to operate eventually!

All,   Some good news...My headache is nearly gone today and I feel pretty good 1 week after my 2nd biweekly G/C infusion so mood is greatly improved!  Doc said headache could indeed be chemo related.  And good news that I don't think I shared before is that my 4cm subclavicular tumor started shrinking after just one G/C treatment so that's encouraging.

Beth


-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: HappyGoLucky
Date Posted: Sep 15 2011 at 2:59pm

Kim

how are you doing today? Been thinking of you every day.
When I had infection in lungs, antibiotic and
I had a cough syrup called promethazine DM and I was able to sleep ~ suppresses it so well. Don't know if u need an expectorant or supressive but I pray you are better. I used a cool mist vaporizer. Can not live without them. Does wonders for lungs.
All the Best,
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: HappyGoLucky
Date Posted: Sep 15 2011 at 3:01pm
Beth I just reread ur post about supraclavicular node ,
I got an invitation to that party too. plus internal mammary node.
Diagnosed pet ct scan Aug 2011
How is your treatment coming along?
 
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: Pink Warrior
Date Posted: Sep 15 2011 at 5:34pm
Matt was off work today and let me sleep in.  I went to bed around 2AM and slept until NOON!  Oh my gosh, what a great feeling.  LOL  I still have a cough, but, I'm not coughing nearly as much.  The cough is still productive and I expect that.  If it was indeed pneumonia, it had been building for weeks and I don't think I'll be coughing everything out over night.  

I feel SO much better today than I did yesterday.  Of course I'm still worried that I have lung mets but at least I feel more like myself than I have in the last 4 weeks.  


-------------
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


Posted By: 123Donna
Date Posted: Sep 16 2011 at 8:01am
Kim,

What a relief to hear you're feeling better.  I hope this round of meds kicks it for sure.  Get lots of rest and remember that chicken soup!

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



Posted By: LauraT
Date Posted: Sep 16 2011 at 8:14am
Kim,

Good to hear that you got some good rest and are feeling better. Sounds like you are on the mend. Take care of yourself  and keep letting Matt do the cooking! :)

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


Posted By: btstark2003
Date Posted: Sep 16 2011 at 9:52am
Kim, so glad you are feeling better!  My intuition is telling me that you do not have lung mets!
 
Karen,  sorry to have you join the metastatic nodes party same time as me.  The Gem/Carbo regimen is working well for me so far (have had  infusions 2 weeks apart).  Side effects are so minimal compared to FEC+T and CMF regimins I have done previously, and best of all the tumor is responding.  I wish nowt that I would have done G/C last time instead of CMF.  I am able to have a good quality of life on G/C so far and my doc says most people tolerate it well. Have you started chemo yet?  If not, is G/C one of the options you are considering?  I did a lot of research on it (I work at Pfizer in R&D) and it seems like a great choice for recurrent or metastatic TNBC, if you can tolerate platins and especially if you are BRCA-.  If BRCA+, then many people think getting on a PARP trial is a good bet.
 
I will send you my phone # in a PM in case you want to talk.
 
Beth


-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: janet c.
Date Posted: Sep 16 2011 at 1:26pm
Kim,
Glad to hear that you are feeling better and were able to have a good sleep. That will help you get on the mend in a big way. I hope you continue to feel better.
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


Posted By: 123Donna
Date Posted: Sep 16 2011 at 1:30pm
Hey Kim,

How are you today?  Will they still schedule the biopsy or wait until you're all cleared up from the pneumonia?

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



Posted By: Pink Warrior
Date Posted: Sep 16 2011 at 2:17pm
Hi Donna.  About the same today.  Felt short of breath when I got up this morning but I had an awful coughing fit.  It seems to be better now that I've coughed up a pint of garbage.  Yuck!  I can't wait until all of this infection is out!

I'm supposed to be hearing from Dr. Chen's office on the biopsy.  I figure they'll call me next week - giving me time to heal.  If I don't hear anything Monday, I'll call them.

xo


-------------
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


Posted By: Pink Warrior
Date Posted: Sep 23 2011 at 1:00pm
Update

Went to see Julie yesterday who took a skin bx for this ugly "rash" on my affected mx site.  She's pretty sure the skin is recurrence - as am I.  It's just so ugly and has changed so much in the last 4 weeks.  She also said that after seeing the skin, she's more concerned about the lungs being positive as well.  I made it to her office without any help but by the time I got there, I was sweating and having a hard time sucking in the air I needed.  Granted, her office is quite a way from the garage.  They got a wheelchair for me so that Matt could wheel me back out to the parking garage.  I can't describe how that made me feel.  Helpless, hopeless.  She prescribed a steroid for me to help with the inflammation and hopefully help my breathing.  I also suffer from horrible anxiety so I can't tell you how much of the shortness of breath is from the swelling/congestion and how much is from an over-active imagination.  Either way, things just aren't good.

How did I get here so fast???  

I'll be meeting with Dr. Ellis next week to discuss treatment options.  ABT-888 being one of them.  I told Julie I didn't think I had much time left and that I wondered if I'd even make it to next week.  She said she didn't think things were quite that ominous..  but, what can she say?  No one has a crystal ball.  She did say that she hopes a new treatment will give me my quality of life back even if we can't eradicate all the cancer.  

I slept good last night.  Woke once to take a pain med and suck down some cough syrup and pass back out.

xo


-------------
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


Posted By: TNinTN
Date Posted: Sep 23 2011 at 1:06pm
Praying you feel better and get what you need.
 
Martin


-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11


Posted By: 123Donna
Date Posted: Sep 23 2011 at 1:56pm
Kim,

Ask Dr. Ellis about the clinical trial:  Abraxane With or Without Tigatuzumab in Patients With Metastatic, Triple Negative Breast Cancer.  I don't see where Siteman has it yet, but it may be available in the future.

http://www.clinicaltrials.gov/ct2/show/NCT01307891?term=triple+negative+breast+cancer+and+metastatic&recr=Open&rank=1 - http://www.clinicaltrials.gov/ct2/show/NCT01307891?term=triple+negative+breast+cancer+and+metastatic&recr=Open&rank=1

Please lean on us and let us support you also. 

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



Posted By: Lillie
Date Posted: Sep 23 2011 at 2:40pm
Dear Kim,
I know you are scared. I know (from experience) that anxiety attacks can cause hyperventilation. Sweetie, I pray you can find some faith, knowledge or thoughts to help keep the anxiety level down.
I am thankful that you slept good last night.

I'm praying that you will soon begin a treatment regime to relieve and squelch the cancer.
We thank God for Matt. Also, us Prayer Warriors are praying for Pink Warrior.

God Bless,
Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED


Posted By: btstark2003
Date Posted: Sep 23 2011 at 2:42pm
Hi Kim,

I am so glad you are going to see Dr. Ellis.  He will have some good ideas for treating you.  I know it can be hard, but try to keep thinking positive.  It is totally possible, as Dr Margenthaler said, that Dr Ellis will help you find a treatment that will get the cancer under control and get you feeling better so that you can enjoy your life with your husband and kids for a long time.  

My chest wall met has now shrunk from 4+ cm down to about 1.5 cm after just 4 weeks on Gemzar/carboplatin, and I feel great.  You can do this!!!!

Beth


-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: Pink Warrior
Date Posted: Sep 23 2011 at 3:04pm
Thank you all so much for your thoughts and prayers.

Beth, how are you feeling on the Gem/Carbo?  I had Carboplatin last time so I wonder if they would allow me to have it again with the Gemzar.  I see that drug working well with several people.  (Gemzar)

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


Posted By: LRM216
Date Posted: Sep 23 2011 at 3:36pm
Thinking of you, feeling your anxiety - as I, too, know it well, and awaiting your visit next week.  Sending loving thoughts,
 
Linda


-------------
Linda - diagnosed at age 62
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


Posted By: HappyGoLucky
Date Posted: Sep 23 2011 at 8:02pm

Kim

Hi, just wanted to see how you getting along? I know you have had more than any person can bear and then some. I am hoping and praying that you have relief and feel better soon!
I think of you often, just im me or let me know if u need someone 60plus years to talk to and we can share.
Love you,
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: abcmom
Date Posted: Sep 23 2011 at 8:42pm
Oh my goodness, Kim.  I am praying for you sweetie!! 
 
Hugs, Keri


-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11


Posted By: Barbi
Date Posted: Sep 23 2011 at 8:47pm
Kim, Stay positive and remember there are lots of treatment options. I agree - check into the abraxane/tigatuzumab trial, or...whatever you feel strongly about.
In any case, know my thoughts and prayers are with you.


-------------
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.


Posted By: sue
Date Posted: Sep 23 2011 at 9:05pm
Hi Kim,

Hoping you will soon be getting the skin and lung issues resolved and treatment to help you feel better.  I have had anxiety attacks too and can relate to that feeling. Ditto what Lillie said about those, and agree your Matt is a blessing. Keeping you in my prayers...

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.          


Posted By: dmwolf
Date Posted: Sep 23 2011 at 11:16pm
Kim, you have done a remarkable thing, maneuvering your mind from a state of abject fear to one positioned to deal with whatever is.   I will be hoping and praying that the rash turns out to be something else, and this is all a terrible nightmare you will soon wake up from.  But if it does turn out to be cancer, I can hear in your voice that you are up to the task of carrying this burden.  Of living joyfully and well.    We are here for you no matter what.  Hope is available, too, at all times.  As Michael Lerner says, sometimes our life circumstances force us to change what we can hope for, but there is always something to hope for and hope is always important to living well with our circumstances. 



Much love,

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.


Posted By: HappyGoLucky
Date Posted: Sep 24 2011 at 1:53pm
well said DeniseThumbs Up
 
 
k


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: btstark2003
Date Posted: Sep 24 2011 at 4:02pm
Kim, thanks for asking. I am feeling remarkably well on Gem/carbo. I have some fatigue on days 3-4 of the 14 day cycle but no other significant side effects so far. I even started training to run a 5k in Nov with my 9 yr old daughter who is participating in Girls on the Run.

Beth

-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: TracyAMac
Date Posted: Sep 24 2011 at 8:57pm
Hi Kim

Just a short note to say hello and let you know that I am thinking about you. I am up to my eyeballs with the provincial election here in Ontario (Oct 6) but I try to check this forum every day or so to see how everyone is doing.

You have always been such a strong pink warrior and I know you will continue with this path.

Sending you much love and hugs from the Toronto area

Tracy


-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial


Posted By: harbin
Date Posted: Sep 25 2011 at 3:26pm

Kim, I pray for the best outcome from you test.  You asked if you can have caboplatine again if it has been used before. I think you can. When I had my recurrence last year, I had caboplatine first for about 3 months. Laster, I started PARP trial with caboplatine and Gemzar. I am sure you doctor can come up with a good treatment plan for you.  - Harbin



-------------
4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery
6/10 Lung mets
10/10 Parp
05/11 Surgery on 2 lung nodules
08/11 Parp failed
10/11 Cyberknife 1 lung nodule


Posted By: dmwolf
Date Posted: Sep 26 2011 at 1:25pm
Kim, how are you today?  I'm thinking about you so much. 
love,
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.


Posted By: zacar
Date Posted: Sep 26 2011 at 6:01pm
Kim,

I'm thinking a lot about you and sending you lots of hugs.

Love,

Caryn C.


-------------
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC


Posted By: TNinTN
Date Posted: Sep 26 2011 at 8:08pm
Dear Kim,
 
You've been on my mind today and I am praying for good results for you. Hope you're feeling better.
 
Martin


-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11


Posted By: 123Donna
Date Posted: Sep 26 2011 at 8:15pm
Kim,

Thinking of you dear friend.

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



Posted By: LRM216
Date Posted: Sep 26 2011 at 10:30pm
Kim,
 
We are all thinking of you, and sending our love.
 
Linda


-------------
Linda - diagnosed at age 62
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


Posted By: HappyGoLucky
Date Posted: Sep 26 2011 at 10:35pm
Dear Kim
Please feel better
 
praying for u.
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: dmwolf
Date Posted: Sep 27 2011 at 12:32pm
Kim, as always, thinking of you and sending love.  Please check in.

love,
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.


Posted By: LRM216
Date Posted: Sep 28 2011 at 10:19pm
((((((((KIM))))))))
 
Thinking of you and hoping you are ok.  
 
Gentle hugs,
Linda 


-------------
Linda - diagnosed at age 62
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


Posted By: HappyGoLucky
Date Posted: Sep 29 2011 at 1:39pm

dear Kim

Just wanted you to know I am thinking of you and praying a for a good outcome.
Peace and Love
Karen


-------------
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad


Posted By: btstark2003
Date Posted: Sep 29 2011 at 2:56pm
Hi Kim,
 
We are all hoping to hear how you are doing and that you are feeling better.  Did you have your appointment with Dr. Ellis yesterday and if so, how did it go?
 
Sending prayers and love and healing vibes down south to you.  I will also send you my phone no. in a PM in case I can provide some local support.
 
Hugs,
Beth


-------------
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda


Posted By: sue
Date Posted: Sep 29 2011 at 8:49pm
Hi Kim,

You are in my thoughts and prayers for healing news. 

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.          


Posted By: dmwolf
Date Posted: Sep 29 2011 at 11:12pm
Hi, folks.  Kim wanted one of her TNBCF facebook friends to let everyone know what's going on with her.  She is very sick with pneumonia right now, so tired that she can't really get upstairs to post on the computer.   Our dear Kim is facing some serious challenges, as the skin biopsy from the rash on her mastectomy scar came back positive for TNBC.  She is going to skip the lung biopsy as they now know she is Stage IV and needs to be in treatment.  The skin biopsy results also make them assume the lung nodules are what they feared - metastatic TNBC.   

-------------
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.


Posted By: dmwolf
Date Posted: Sep 29 2011 at 11:15pm
Anyways, she needs our love and support right now.  (Steve...maybe your advocacy?)  I think she'd be fine with people who are not already FB friends of hers sending a request to connect that way.  I don't feel comfortable posting her full name here without her permission, but if you pm me or send me a message on FB I'll tell you her name so you can be in touch.
love,
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.


Posted By: 123Donna
Date Posted: Sep 29 2011 at 11:23pm
D,

Thanks for updating everyone on Kim.  She has an appointment tomorrow at Siteman Cancer Center. I hope that she's well enough to make the appoinment.  I pray whatever chemo she chooses it kicks it back to NED.

Kim - we love you and praying for you.

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



Posted By: Allison
Date Posted: Sep 30 2011 at 12:03am
Kim,

Hoping and praying for some good words from the experts at your appointment tomorrow. My heart is aching for you!! 

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.


Posted By: harbin
Date Posted: Sep 30 2011 at 12:26am

Kim, Hope you feel better soon. I am sure your doctors will come up with a good treatment plan for you. Hugs.



-------------
4/08 dx IDC,stg2,neg. nodes,4xAC,8xTexol& Avastin,BRCA-
3/10 Recurr Chestwall,surgery
6/10 Lung mets
10/10 Parp
05/11 Surgery on 2 lung nodules
08/11 Parp failed
10/11 Cyberknife 1 lung nodule


Posted By: Barbi
Date Posted: Sep 30 2011 at 10:33am
Kim, I am so sorry for this new development. Any of us who have developed stageIV can relate to how you're feeling, I would imagine.
Concentrate on kicking the pneumonia and getting into treatment for this beast called tnbc! You were one of the first faces I remember seeing when I first joined this board, and I remember thinking how strong you looked!  I know you've got that fight in you somewhere, girl! And, I know I don't have to tell you, that we are all here for you.


-------------
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.


Posted By: LauraT
Date Posted: Sep 30 2011 at 10:40am
Kim - I'm just so sorry that you are here; praying for you, for your family, for the doctors to know exactly the perfect cocktail to put you on to knock this cancer down and out. We love you and will be here for you every step of the way.

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


Posted By: christina1961
Date Posted: Sep 30 2011 at 11:26am
Kim,
I'm so sorry you are battling this and I am sending all positive thoughts your way.  I hope your treatment will start soon and strong and knock this wretched cancer out!
 
Christina


-------------
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.


Posted By: LRM216
Date Posted: Sep 30 2011 at 11:39am
Prayers, optimistic thoughts and much love are being sent to you, Kim.  I hope your load lightens as soon as possible. 
Linda

-------------
Linda - diagnosed at age 62
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


Posted By: 123Donna
Date Posted: Sep 30 2011 at 3:26pm
Here's an update from Kim:

Cancerous, enlarged lymph nodes in the lungs are the culprit to the shortness of breath and constant irritation/cough. Clinical trial starts 10/10. Will be spending one of every 3 weeks in STL for 18 weeks/6 cycles or until no longer tolerated or disease stabilization.

I believe this is the clinical trial she'll be on:

http://www.clinicaltrials.gov/ct2/show/NCT01333137?term=breast+cancer+and+276&rank=1 - http://www.clinicaltrials.gov/ct2/show/NCT01333137?term=breast+cancer+and+276&rank=1

She's feeling better today and as an appetite.

Kim - love you and praying this chemo kicks you back to NED!

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



Posted By: LRM216
Date Posted: Sep 30 2011 at 3:56pm
Thanks, Donna.  I am glad to hear she will be beginning to wage war against this beast of a disease, and am happy to hear she has an appetite - that's a good start.  I don't want to seem ignorant; however, I guess I am!  Do the lymph nodes in Kim's lungs mean it is lung cancer, or is it still only BC that has spread to more nodes?????  Well, whatever, I am just glad to hear they know what's going on so that they can begin to attack it all.

-------------
Linda - diagnosed at age 62
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


Posted By: 123Donna
Date Posted: Sep 30 2011 at 4:09pm
Linda,

Kim could probably better explain this but I think it's tnbc spread to the lungs.  They biopsied her skin and it was tnbc mets so they are assuming the lungs nodes are also tnbc.  Kim correct me if I'm wrong.  I hope Kim will be feeling better soon and she can update everyone on TNBCF.  She knows we're all worried about her and that we're sending our 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



Posted By: sue
Date Posted: Sep 30 2011 at 5:22pm
Kim,

Ditto Donna that we are all worried about you and sending our love. More positive, healing thoughts being sent your way.Hug

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.          


Posted By: TNinTN
Date Posted: Sep 30 2011 at 5:36pm
Thanks for the update, Donna, even though we have to learn that Kim is still suffering. Our prayers continue. Kim, hang in there. We are with you!

-------------
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11


Posted By: ann u
Date Posted: Sep 30 2011 at 5:38pm
Kim-
 
Shoot! Shoot! Shoot! - although I am saying worse out loud right now!
 
As always, praying for you and for your new treatment going forward.  At least you know what you are dealing with now.
 
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



Posted By: K in Sugar Land
Date Posted: Sep 30 2011 at 6:07pm
Kim, Prayers and love are being dispatched from Sugar Land, TX.  Hang in there, we are all here for you.

-------------
Dx IDC TNBC MDA2/11 age 51 T2N0M0 Grd 3 4.8cm BRCA- vitD22 Taxol 12wk FAC once 3 wk for 12 wk Complete chemo8/11 Tumor not seen on scans Lumpsurgery 0/4 nodes9/11 pCR 30rads done11/11 NED vitD3903/12


Posted By: Pink Warrior
Date Posted: Sep 30 2011 at 7:29pm
Hi all.  Thank you SOOO much for the thoughts and prayers.  I was able to read them from my phone but unable to post.  

I feel worlds better today - I guess the antibiotic has kicked in.  My new (previous) oncologist gave me a stronger antibiotic today to use from here on out though and also an inhaler and prednisone pack.  Hopefully it will help ease some of the shortness of breath issues.

To try and clear up whats been going on:

About a month ago, I noticed a rash on my left chest wall, very light, small.  Well, I sent a pic to my surgeon who said it looked radiation related but to watch it for signs of spreading.  Meanwhile I get this wretched cough that won't quit, fever, etc.  Chest xray says pneumonitis, PET says lung mets and mets in the pectoral area (skin).  Well, the issues with my lungs weren't resolving long enough to do a biopsy so we biopsied the skin.  With the skin being positive for TN mets, they aren't recommending the lung biopsy.  They think it's just an unnecessary hardship on me at this point and if it's TN mets, it's not going to change the treatment they're giving me for the skin mets.

I will begin clinical trial P276-00 in combination with gem/carbo on 10/10  I will receive the  study drug along with the chemotherapy on Monday and then the study drug alone on Tuesday thru Friday.  Then, on the following Monday, chemo only, no study drug and off the rest of the week.\.  Then, off all drugs for 1 week and repeat the process again on the fourth week for at least 6 cycles unless the drug is proving ineffective (I'll be checked after 2nd cycle) and then we will move on. 

So, as of now, I have skin and lung mets.  Lung mets are hilar and mediastinal nodes.  Skin mets is at the site of the affected breast mx.  The skin mets is about the size of the bottom of a 16 ounce soda bottle.  It looks like someone just "stamped" me with it and it left this ugly red bruise.  

Much love.  Hopefully I continue to feel well!

xo

ETA:  Donna has the correct link to the trial.  
http://www.clinicaltrials.gov/ct2/show/NCT01333137?term=breast+cancer+and+276&rank=1 - http://www.clinicaltrials.gov/ct2/show/NCT01333137?term=breast+cancer+and+276&rank=1

Ironically, there were only 12 slots at WU and they were full.  One opened today.  Shocked


-------------
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


Posted By: kirby
Date Posted: Sep 30 2011 at 7:53pm
my thoughts are with you always Kim.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: LRM216
Date Posted: Sep 30 2011 at 8:07pm
Thank you, Kim, for letting us all know.  I am so glad that you are feeling better today, and I pray to God that in a short time all the cancer is knocked out.  I am so very, very sorry that you have had to suffer so and am so grateful that you will begin treatment to slay this beast.  God bless, Kim, we are all surrounding you with love, strength and lots of hope that this will do it once and for all.
 
Linda


-------------
Linda - diagnosed at age 62
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


Posted By: dmwolf
Date Posted: Sep 30 2011 at 8:16pm
Kim, thanks for updating us.  This sounds like an excellent plan, though of course I am so sorry this thing has darkened your doorstep.  We are here with you, every step of the way.
much love,
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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