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Sis has recurrence

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mainsailset View Drop Down
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    Posted: Aug 29 2011 at 8:04pm
Hi there,
   I just got a text from my sister that our doctor told her her latest CT shows a recurrence, this time in her liver. She's gone nearly 11 weeks without chemo as her scans and TM's came back clean enough for the oncologist to call her in remission. Right now I'm waiting for a call from him or an email to see what his plan of action is. Her text said she would go back on Friday to start another chemo.
   It's been such a gift to have an oncologist for her that is a no holds barred kinda guy. Thought she is not a TN, she is a dbl neg, he has treated her as I would want to be treated and I am grateful for that.
   So far she's been on Abraxane/Avastin, Xeloda, Gem & Taxotere. Any suggestions? All I can think of right now in the blurr that I'm in is Halaven.
   I had just been out picking flowers to dry for her granddaughter's wedding on 9/10, hard to wrap my mind around this one.
Any thoughts to straighten me out would be appreciated and as soon as I hear from the onc I'll post what his plan is.
   Thanks dear family
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2011 at 9:09pm
Oh Mainy-
 
I am sorry to hear this.  You and your sister are in my prayers!
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2011 at 9:39pm
Mainy,

What rotten news.  Are there any clinical trials for her type of bc?  Has she tried any of the platinum chemos like carbo or cisplatin?  Is she ER+?  Maybe Doxil, but right now there's a shortage of that drug.  I'm glad her oncologist is on top of things.  Please let us know how they decide to treat it.  Maybe the new drug will kick it back into remission.  This really sux.

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 5:54am
Dear Mainy,

I am very sorry to hear about your sister...Those words seem so inadequate but as you know me I know you know they are sincere..

My only thought would be to get a second opinion from MD Anderson Cancer Center. They have a special clinical trials unit and last I checked I believe they have a 100+ clinical trials in breast cancer. I know it is a trip and the cost may be a factor and her oncologist is great but some of the trials they have are proprietary and that would be my thought.

I can try to help her get an appointment sooner than later.

again, truly sorry.

she will 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 7:49am
Mainy - I really hate to hear this; so sorry you and your sister are dealing with this again. One thought I had, in addition to Donna and Steve's suggestions, is to check over at Inspire to see what ladies with your sister's type of cancer have used. Also, you could go the forum on No Surrender to the thread called, "What's Your Question?" and post her treatment history and ask Edge to give you his thoughts on possibilities. It may take a couple of days for him to respond, but he seems to have his finger on the pulse of what all is available and the studies/evidence to back up his thoughts.

You know that we love you here (and by extension we love your sister, too!). All of you are in my prayers.

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 Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 8:46am
Mainy - So sorry about your sister.  Mine is here with me thise week mostly because she needed to "see" what's going on. Gotta love them!  Hope they hit on the right drug soon!
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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 9:31am
Thanks from the bottom of my heart for the responses dear Family. I'm thinking of asking about adding metformin but it will be a ladylike questtion from meWink  And yes Donna I'll ask about the carbo/cisplatin. I was pretty stunned last night to get the text and she asked me to focus on the Addision's first in my frantic search so I've been going down that road.
 
Steve, at this point she's really too weak to travel to MD. I wish she wasn't for many reasons but that's just the reality but I plan on looking at what Fred Hutch in Seatte has in their toolbox because our doctor is in their satellite group. As we all know, the clinical trials are a gift to us but so often the criteria weeds out a patient who has progressed. All the more reason for all of us to do our homework and make plans at the outset, eh?
 
And Steve, I have to tell you, I went back to your message of joy and life more than once last night to give me a smile and renew my resolve so thank you once again. M
 
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 9:45am
Donna, she is ER/PR neg & HER2neu.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 11:07am
Dear Mainy,

I am glad you were uplifted..

One of the major problems, as you know, is that many trials have ECOG requirements, as formulated by the Eastern Cooperative Oncology Group. Most of the trials I have seen including the new UAB trial will not accept you if you have ECOG >2, even trials with metastatic disease. Makes it tough to qualify, for some.


                  

ECOG Performance Status


These scales and criteria are used by doctors and researchers to assess how a patient's disease is progressing, assess how the disease affects the daily living abilities of the patient, and determine appropriate treatment and prognosis. They are included here for health care professionals to access.




ECOG PERFORMANCE STATUS*
GradeECOG
0Fully active, able to carry on all pre-disease performance without restriction
1Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
2Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours
3Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours
4Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair
5Dead

love,
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 12:13pm
Dear Mainy and Sis,
I am so sorry this diagnoses is a reality. Mainy, It is obvious how much you and your sister love each other. It is perfectly normal for you to be a bit frazzled and frantic. Good luck in your search for a course of treatment.

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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 12:16pm
Sorry to here about your sister.  I am sure whatever treatment they decide for her will work for her.  You guys are both tough...I am sure she will beat this cancer again. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 12:43pm
Mainy,
I am so very sorry about your sister. I wish I could help you with a suggestion but I really don't know. I can however pray for your sister and you. I hope somebody can help you especially since you always help everyone else. I just hate, hate, hate cancer!!!!
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 sue Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 1:49pm
Mainy, 

So sad to hear about your sister's diagnosis. It must be very frustrating to deal with this again. Sending positive thoughts your way for finding a successful treatment.  

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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 3:48pm
Thanks again to everyone. I still haven't heard from the doctor so I'm thinking I won't until they go in on Friday for her first chemo. Sis hasn't heard from him either. I am always amazed by her daughters in that they quite simply put one foot in front of the other and never waiver but commit to doing whatever is necessary to fight. That's the thing about this cancer thing, it doesn't give you any time off, just asks and takes and takes and asks. Thanks again.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 5:13pm
Mainy
 
Just read your posts and I am feeling so bad for your sister and her family and u of course. Keeping you all in my prayers. I need that strength u have .
 
Peace
Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 6:12pm
Mainy, I'm so sorry.  I know you love her with all your heart and have completely been there for her as she's dealt with this and probably many other trials.  Since Taxol/avastin did so well before, how about trying it again?  Or picking a drug that attacks the same mechanism, Halaven?

We love you (and your sis),
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 LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 6:17pm
Just came on as well, Mainy, and I am so very sorry to hear this.  I don't have much to offer, unfortunately, but I second the suggestion from Laura and definitely write to Edge on No surrender.  Make sure you state in your topic "ASAP" and I am sure you will hear from him right away.  He is truly a God-send to so many with his detailed suggestions.  Please know that I wish you both nothing but the best and that you and your sister are in my heart 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 7:46pm
I am so sorry to hear this you are both in my prayers,this disease is awful.
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 9:36pm
NO SURRENDER!
 
I love that.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2011 at 10:20pm
Mainy,

That's what family is for.  Your sis is so very lucky to have you and her daughters taking up the fight for her.
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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