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What to do? ... bad news

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connie74 View Drop Down
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    Posted: Apr 25 2011 at 7:13pm

I got the results of my PET today, bad news... dont you just hate those days.

The cancer has spread to my liver again, we dont know how big yet she is ordering them to measure, its also in lots of lymph nodes including those around my stomach. It is also in my bones, my left hip and surrounding bones in that area, humerus, sternum, lower spine, left shoulder. She ordered an xray because she wanted to know if my bones were getting to the point that they might break.

What gets me is the cancer spread that quick in less than 6 weeks. My last PET scan showed lymph nodes in my chest were decreasing and the hip bone.

She started me on Abraxane today but I have little faith in it, my cancer spread light crazy on Adrimycin, Taxotere, Cytoxan and Abraxane is a cousin.

The only drug my cancer has responded to was Ixempra and Xeloda and the side effects got so bad that I gotten to where I could barely walk and was at the point of using a cane. Gemzar/Carbo slowed the growth a good number of months. Other than that spread.

I know my options are limited and Im getting scared my time is running short because of how fast it is spreading with few drugs responding.

Any advice? I am getting to where I am feeling like a loss cause. I cant give up whether the drugs work or dont. I dont want my kids to feel like I gave up, I have to try for them.

Anywho thanks for listening.
Connie

PS This is my past history.
Dx 08/11/09 - Triple Negative Tumor 1cm 4/20 nodes PET after surgery showed mammary gland lymph node 'lite up'
Treatment
Oct 09 - ATC 6 doses - cancer spread during chemo to chest nodes, C7 and liver 2 spots
Mar 10 - Xeloda & Ixempra, Zometa
June 10 - Bad SE. No spots on liver, 1 node in the armpit lighting up. Starting Gemzar/Carboplatin/Avastin
Aug 10 - New lymph node in chest, trying to get Parp
Nov 10 - PARP added
Feb 11 - PARP failed. Lots of nodes, sternum, left hip bone. Halaven
Apr 11 - Halaven failed. Spot on liver, lots more nodes even around stomach, left shoulder, spine. Abraxane

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Post Options Post Options   Thanks (0) Thanks(0)   Quote tracy5000 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:21pm
I can't think of any particular advice that would help, but wanted to post {{{hugs}}}. 
Dx 5/06 Age 39 Stage II, Grade 3
(3.5 cm, 0 node) part mast, AC&T
Dx 5/09(axil & supra intra & media nodes, pleural mass)
treatment A & A
10/09 NED Rad & Maint Avast
8/10 3.5 cm Hilar Node, A & A
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sue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:34pm
Connie,

I am not a medical expert and have not been through what you have experienced, but want to offer that it has been shown in situations such as yours that with drugs or not, if you don't want to give up, you will not be giving up.  You will continue to fight with or without the drugs because that is where your heart and soul want to be, and we will be fighting with you.  

My heart goes out to you and your family, and you will be in my prayers.  

Love 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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 8:39pm
Hi Connie,

It does seem like you've tried many chemo regimes and they haven't worked.  There must be something else out there to try.   Is it possible to get a second opinion at a place like MD Anderson?  Is there any way they could do some molecular profiling on the tumor to see which chemos might work for you?  My friend had such a test done and she's on a new chemo that will hopefully work better for her.  Sorry I don't have much advice to offer, just support and 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 Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 9:19pm
Hi, Connie,
 
Looking at all the treatment you've had, I don't think anyone could ever say you didn't try your best.  I have much respect for those of you who continue the fight against overwhelming odds.  You will be in my prayers.
 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2011 at 10:37pm
Dear Connie,

I agree with Charlene...there is no need to ‘prove yourself’ to your children...you have already waged a courageous battle and unfortunately as it happens, all too often, to the marvelous women in our family, your disease has progressed.

I am not a medical professional and I cannot tell you what to do but I believe you are at a crossroads and YOU have a very tough decision to make....and when I say YOU...it gets down to how you want to live your life...not how your children wish you to live it, but how you want to proceed.

It seems to me that you are at a crossroads...either you can try to exhaust whatever resources your oncologist may suggest and/or second opinions from other oncologists....or, and I write this with a very sad heart,  you can make a decision to speak to a good palliative care team and get started on a Home Hospice program to ensure that you experience as little pain as possible and are as physically comfortable as possible.. also Hospice should be able to have a professional social worker get involved to help you and your family deal with this tragedy.

If you have the strength, insurance coverage and inclination I can try to help you get appointments with the following physicians(please see below)....I am not saying you should see everyone but they are all familiar with clinical trials that they might suggest as all standard of care + parpi has failed you.

I am sending you my contact information and if you would like to talk I would be honored to talk with you. I do not have a magic wand and I am not a medical professional but it may be of some use to talk?

Here is a list and I have eliminated certain sites such as UAB in Birmingham, Alabama not because that might be a good choice...jus that I don’t know anyone there..

As Donna suggested MD Anderson Cancer Center (MDACC) in Houston TX has more clinical trials in breast cancer than any other center in the country..

I would suggest seeing Dr. Ana Maria Gonzalez there and I would imagine she may see you and then refer you over to MDACC’s Clinical Trials Dept.


Other oncologists who may have some ideas are

Dr. Lisa Carey...UNC Chapel Hill, NC..


Dr. Edith Perez....Mayo Clinic, Jacksonville


Dr. Tiffany Traina....Memorial Sloan Kettering Hospital, NYC


Also, I have a specific suggestion....if you decide to continue with chemo or seek second opinions...I would recommend you look into a palliative care program that will help you if you decide to fight your cancer with chemo....Palliative care involves pain management and other issues such as nausea, GI problems etc. etc. and also psychological help is offered...It is unfortunate that the Hospice program is also considered palliative care and it all gets lumped together under the same heading and often patients and their physicians remember only Hospice...Palliative care can be so much more than Hospice..

My heart is with you,

Steve






Edited by steve - Apr 26 2011 at 12:26am
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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NinaE View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NinaE Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 7:31am
Connie, you clearly have been fighting hard, and even now from your current vantage point of bad news you're still thinking of your children. You've been through much and have tried with every fiber of your being -- it's just this cruel and horrible disease is thwarting your best efforts every step of the way.

I see you've tried many chemos already, and I'm not qualified to suggest anything, in any case. So I also wonder whether this might be the time to make a trip to a "big name" for a second opinion.

You're in my thoughts, and I will hope very hard that something can be found that will help.
Stage IV at dx in Dec 09, at age 38. Mets to lung, axillary, IM and mediastinal nodes.

4xAC-->dd Taxol. Dbl mast, 6/10. Radiation, 8/10. NED since June 2010.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 8:50am
Connie,

I don't know if this would be an option for you, but you might want to check out this new clinical trial for TNBC.  I believe the study is currently open at the Univ. of Alabama.

http://www3.ccc.uab.edu/index.php?option=com_content&view=article&id=405:uab-launches-national-drug-trial-aimed-at-triple-negative-breast-cancers&catid=45:newsroom

http://www.uab.edu/news/latest/item/1053-uab-launches-drug-trial-aimed-at-triple-negative-breast-cancers



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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 1:05pm
Connie, since the Ixempra worked so well before, how about trying it again, though this time at a reduced dosage that doesn't cause side effects at the level you experienced before?   That sounds to me like a better bet than Abraxane, because neither taxol (during TAC) nor Halaven (hits same pathway as taxanes) had a dramatic effect on your cancer, and Abraxane is just dressed up taxol (in albumen).

I'm so sorry you are facing this.  You have done so much to keep yourself here with your children.  They must know that.  No matter what, never feel you have failed them, because you most definitely have not.  You are fighting as hard as you can.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote connie74 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 2:21pm
Thanks so much for each and everyone of your replies and suggestions, prayers I appreciate them all.
Im sure my children know that I have fought hard but I am just as stubborn as a mule I wont give up not until I have no choice and I will not even allow myself to think of Hospice.
Yes I have discussed trying Ixempra with her before and she worries that my cells may have become immune and as rough as it was on me she is also concerned that I will go through all the bad side effects for nought. BUT lol if Abraxane doesnt work soon Im fighting for another try with Ixempra unless I decide to go for a clinical trial.
I have thought about the trial at UAB my concern is its a phase 1.  I have sent them a email for more information.
I plan to also contact MD Anderson Ive been there before for a second opinion but he was a jerk so I will try the lady you suggested Steve.  I have also looked at the trial regarding whole body hyperthermia there I am going to see if I can get some more data on it. 
They gave me 6 months over a year ago and well I am still here hopefully, prayfully I will be saying the same thing about this time ...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cinderwee Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 3:21pm
Connie you are an amazingly strong, inspirational woman.
 
Much love to you,
Cindy 46
DX 11/29/10
Stg1 G3 IDC ER-PR-Her2-
<1cm,cln marg,0/1 neg
No BRCA
Lumpectomy 12/28/10
MammoSite rads 1/10-1/14
Taxol/Her x12 DONE!
CVP/Her ev 3wks x4 begin 6/23
Continue Her Mar2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mwall47 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2011 at 9:36am
There is a clinical trial that I was on with a drug, similar to Xeloda, but with less harsh side effects. The trial is A Phase 2, open label study of EZN-2208 (PEG-SN38), and SN38 is the active part of Irinotecan which was approved for treatment of colon cancer, like Xeloda. I was on the trial for nearly 8months before it stopped working; it shrunk the bone mets on my chestwall and shrunk the tumor. Now, I am looking again. This trial was through US Oncology, but I believe M.D. Anderson has this trial enrolling now.
 
I wish you the best if you want to continue to fight this monster. There is also a Phase I Clinic in San Antonio, and Dr. Tolcher has lots of new target therapies. It is call the South Texas Accelerated Research Technology, START Clinic, and it can be found on the net under startthecure.
 
Good luck and God bless you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 12:33am
Dear all,

A dream of mine was realized these past two days. I finally got to meet my dear friend Connie and her husband. It was very important for me to put a face to this marvelous woman who has supported so many, myself included, with her insightful wisdom.

Connie is a warrior. She inspires me, and I know I am not alone, here, in those feelings.

We were able to spend some lovely time together. I got a wonderful tour from Connie and her husband and we just sort of hung out together, making plans as we went along. Today was great because we were able to watch The King’s Speech together. I think the best testament to our friendship is all the laughter yesterday and today....and yes, we spoke about serious matters but there was also much, much laughter....it was really lovely to get to know each other in a more profound way but having said that I think we both have come to know each other very well over the last several years but this in-person meeting was particularly enriching.

So, my dear friend, thank you for being you and thanks for letting me visit in the midst of the battle. and thank you, too, to Connie’s DH for your graciousness and friendship.

Connie, our prayers and love are with both of you.

love,

Steve

.................

I wrote Connie and received her permission to post the above....

She wrote me in response- 

I would be appreciative if you did share I really do exist, battle scarred but still filled with love, laughter, and hope.


Edited by steve - Jun 09 2011 at 12:37am
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 Musiccitygirl Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 3:44pm
Hi Connie -

I am so sorry to hear your news, I'm inspired by your strength and will to keep going.  Seeing all of the treatment you have been through, I would say you have never given up and your children should be proud of how strong you are.  I'm quickly finding out this cancer is not an easy one to treat.  This is my first post on the website - like you, I was on Taxotere and a new tumor grew like someone poured fertilizer on it.  Just had a mastectomy on 5/31 and I'll find out tomorrow what my oncologist suggests for treatment.  His first reaction was to continue with my scheduled radiation and follow up with scans periodically.  He didn't think another chemo drug would work but he would research any possible options.  Not doing additional chemo feels like jumping off a cliff, but at the same time I don't want to do chemo just for the sake of doing it.  I'll let you know if I hear of any alternative options, I also have several doctor friends doing research for me.  Hang in there!

Mary
Dx 9/10 Stage II, grade 3, neg nodes, lumpectomy. A/C, 1 round Ixempra, 3 Taxotere. 1 mo later, new 6+ cm lump, mast 6/11 & rads. Recurrence 8/11, no response to standard treatments as of 1/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 4:01pm
Mary,

You might want to get a second opinion for treatment of this new tumor.  Second opinions are a good idea and you might be given some new ideas your first onc hadn't thought of.  So glad you were able to feel comfortable enough to post.  Wishing you the best in fighting this cancer again.

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 Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 5:38pm
Welcome Mary. Where are you getting treated? I am in Nashville and go to Vanderbilt - love them! Hope your doc has a great suggestion tomorrow, but I agree with Donna - a second opinion never hurts!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Musiccitygirl Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 5:44pm
Hi Barbi - I'm getting treated at Tennesse Oncology at Williamson County Hospital.  Glad to hear you like Vanderbilt, I am friends with the CEO of the Cancer Center.  I plan on getting some advice from her on where to go for a second opinon.  I really like my oncologist and he's got a great reputation but a second opinion doesn't hurt.  Thanks!
Dx 9/10 Stage II, grade 3, neg nodes, lumpectomy. A/C, 1 round Ixempra, 3 Taxotere. 1 mo later, new 6+ cm lump, mast 6/11 & rads. Recurrence 8/11, no response to standard treatments as of 1/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2011 at 9:28pm
Agreed! In fact, my oncologist volunteered suggestions for a 2nd when I was first diagnosed. I found that very impressive. Glad you are happy with your doc too. That's sooo important.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2011 at 1:30pm
Dear Connie,
 
I am the 'other' Connie, sometimes they have to go back to the older chemotherapy - vinorelbine, methotrexate, etoposide.  See if the oncologist will think outside the box to try some older combinations.
 
There has to be something in the name? 
 
2007 - dose dense AC + T
2010 - TRIO trial, Taxotere plus (anti-VEGF) - an Avastin like chemotherapy.
            Gemzar/Cisplatin
            Xeloda
            Abraxane
            Vinorelbine
            Adriamycin
 
Love,
 
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2011 at 1:44pm
Dear Connie,
I am a big believer in combining brilliant medical interventions with complementary options. 

If you haven't done so, please look at the Edge CAM.  Constantine, who is the author of this protocol has suggestions for enhancing the body's response to chemo and rads.  One of the reasons for considering this approach, is if you look at your history, it is obvious that you or your cancer cells have a tremendous capacity for DNA/RNA repair; the genotoxic regimes may not be working because of this.  Some supplements, like Vitamin D. parthenolide, and curcumin,  will sensitize this process, and may help the chemo work better.

When I was diagnosed in March 09, I went to 8 different oncologists (one of them at MD Anderson; one was my brother) and researchers, and I showed several of these doctors the Edge CAM, and well as some other integrative protocols.  They were mightily impressed with the recommendations and the citations Constantine used to back up these recommendations in the Edge CAM.  It got their blessings.

I was stage 1 tnbc wtih a 1.4 cm tumor and high grade DCIS, and although adjuvant chemo was recommended most ernestly, I did not end up doing chemo or rads due to secondary health issues.  But if I had taken that road, I would have gone with Constantine's Edge CAM as icing on the chemo cake.  In the end I chose to go with the protocol and lifestyle changes because I felt I had to do something since I could not do chemo. 

Here is the link, although I cannot make it "hot", just copy and paste.  Please consider it.

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927

All my best,
Bliss

Edited to correct link and to add "parthenolide".




Edited by MsBliss - Jun 10 2011 at 2:25pm
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