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diane1234 View Drop Down
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    Posted: Nov 10 2010 at 4:13pm

Now decision TIME!!!!

Posted 5 minutes ago

We made it home late last nite. LONG nite after taking chemo and flying home immediately after. I was PUMPED on the steroids. Still am today. My face is RED as an apple. I am dealing with nausea, but I am holding my own. The reports were re-read about the spot we THOUGHT was hangin on to the chest wall. Happy to report after more and more evaluation, IT IS NOT CANCER!! Scans show that there is NO ACTIVE DISEASE SHOWING ANYWHERE IN THE BODY!! PRAISE THE LORD! We call it DANCING WITH NED...NO EVIDENCE OF DISEASE. Now where do we go from here, we go back in three weeks do more scans. The hope is to get some back to back scans showing NED is still there. I call it WATCHING like a HAWK. I do not have any more chemo scheduled at this time. Craig will go with me the next trip. That is where WE sit and make the next decision. Do we continue on what we call as Maintenance chemo which is LOW DOSE THERAPY TO HELP KEEP THE BEAST AWAY, or do we go on Chemo Break, and BE ON GUARD. We struggle with this, because there is a thing called getting TOO much chemo when it is not needed. We know it can become way to toxic, but we also know the nature of my Triple Negative Breast Cancer. We know how fast and aggressive IT CAN FIRE RIGHT BACK OFF AND MOVE! We are waiting on the PARP Inhibitors to be released by the FDA. They are in stage III trials and showing great success with TNBC. They just may be our TARGETED THEREPY that we lack right now. We HAVE NOTHING but radiation and chemo. The other 85% have hormone blockers. They are not for us. Thank u for the prayers. We are now traveling into unstudied territory, OH MAN HOW DO WE MAKE THE DECISIONS????????

XOXOXOXO,
Diane
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 6:43pm
What a tough call, Diane! You must be out of your mind!!!
 
Now more focused, I am waiting to see as well and have not taken anything since the first round of chemo, so I know where you are coming from.  It is a hard call, but I would wait to get the two "CLEAR" scans and go from there.  NO PRESSURE...
 
Whatever you decide, it will be right for you! Remember, you are in control of how and what you decide for your health care. 
 
Blessings from the Good Lord and the CLEAR scans, along with the previous chemo and I would be good to go!
Hugs as you make your decisions, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 7:06pm
Hi Diane,
 
May the goodness of the Lord guide you as you go through the decision-making.  You are in my prayers.  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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 7:16pm
Diane, congratulations on being NED!!  That is SO wonderful!   As for your decision, I have no idea.  I haven't seen any data on surveillance vs low dose chemo once someone becomes NED.   You might ask on the Inspire site and see what they say.   I'll ask around here and see if anyone knows of any rational basis for deciding one way or another.
love,
d
**could you tell us again what chemo you went on to get to NED?
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 abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 7:29pm
That is great news Diane!  I know you will make the right decision. 
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 diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 9:13pm
I did three treatments of carboplatin/Avastin/Taxotere. Every 21 days. Then developed blood clots both lungs so the Avastin was pulled. After first three treatments we showed remarkable decrease. Then we did three more Taxotere/Carboplatin. Every twenty on days. Scans done again and NED!! Then he went ahead and ordered two more treatments. I finished the last one last night around 7 pm. Trying to bounce back again. Then we scan again in three weeks. We are gonna peak in there and see if we can get two back to back clear scans. Then DECISION MAKING.....UUUGGHHH 
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2010 at 10:12pm
Diane,

You have made some remarkable progress.  I know you're hoping for another good scan, then decision time.  I don't have an answer, but maybe ask your onc about the benefits or studies supporting going on low dose chemo.

I'm so happy for you!  May you stay NEDClap
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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diane1234 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2010 at 8:51am

Thanks to everyone. That is WHERE Lean towards. I feel like the aggessiveness of this disease, I TRULY FEEL LIKE WE NEED SOME SORT OF AMMO ALL THE TIME. I know it is a double edge sword because chemo too can cause such difficulties..

LOVE AND MAY GOD BLESS US ALL,
Diane
 
PS Donna I have been thinking of you. Still praying yours is NOT reccurrence!
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2010 at 6:05pm
Diane what wonderful news.  Boy I wish I could suggest something in regard to how to proceed, possibly after the next scan and hearing what your Onc has to say then maybe a second opinion would make you feel more comfortable?  Just a thought...
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 4:07am
Dear Diane,
 
Something to consider and possibly share with your oncologist....current findings regarding extending chemotherapy.  
 
Patients with metastatic breast cancer live longer on average if their chemotherapy is continued after their cancer is brought under control, a new meta-analysis shows.

Prolonging first-line chemotherapy improves outcomes for patients with metastatic breast cancer - new data reported at the 35th ESMO congress

11.10.10
Category: Milan 2010 News

Contrary to what many oncologists believe, patients with metastatic breast cancer live longer on average if their chemotherapy is continued after their cancer is brought under control, a new meta-analysis shows.

The new results, presented at the 35th Congress of the European Society for Medical Oncology (ESMO), address an important area of debate in cancer treatment.

“In metastatic breast cancer there is substantial controversy over how long chemotherapy should be continued, in the absence of significant toxicity, after the achievement of disease control,” said Dr Alessandra Gennari from Galliera Hospital in Genova, Italy.

In practice, the number of chemotherapy cycles patients are given tends to be based on their response to treatment, how well their symptoms improve, and how much toxicity they experience from the treatment, she said. “Our study addressed the question of whether prolonging chemotherapy after disease response or stabilization is associated with a prolongation of survival and time to progression.”

The researchers identified 11 randomized studies that had compared longer and shorter durations of chemotherapy in a total of 2269 patients with metastatic breast cancer.

Overall, longer chemotherapy duration was associated with a 34% reduction in the rate of disease progression, where progression is defined as a significant increase in the size of metastatic lesions and/or the appearance of new metastatic lesions.

The analysis also showed that longer chemotherapy durations were associated with a 9% reduction in the rate of death during the course of the studies.

The results justify a policy of prolonging chemotherapy until disease progression or unacceptable toxicity in metastatic breast cancer, Dr Gennari said. Moreover, these results raise several questions that could be addressed in future trials, the most important being the combination of chemotherapeutic agents and new targeted agents in prolonged treatments.

“The take-home message is that despite what many oncologists believe, prolongation of chemotherapy in metastatic breast cancer after the achievement of disease control affects the history of the disease and, in the presence of acceptable toxicity, may be considered routinely.”

“This meta-analysis addresses an extremely important topic,” commented Dr Monica Castiglione from University Hospital Geneva, Switzerland. “The duration of first-line chemotherapy in breast cancer is a matter of debate and most oncologists would consider stopping chemotherapy when the disease is controlled, and continuing with endocrine therapy in case of hormone-sensitive disease. For patients with negative hormone receptors this possibility is not available, making the question of duration of chemotherapy even more important.”

It would be valuable to have additional data on how continuation of chemotherapy affects different subgroups of patients such as those whose tumors are hormone-receptor positive and negative, Dr Castiglione said.

Love,
Connie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 8:45am
Connie:  My dear Canadian Sister! So good to see you posting! Hope you are doing well and that life is being good to you and yours'......I miss you here but do respect your decisions.  I am still waiting for my BRCA test results and if positive, will try to get in to see Dr. Dent if that is possible. Bless you my dear, Love and Hugs, Helen in NS 
 
Diane:  I am so sorry you are having to make these decisions, they are tough ones and only you and your docs can be the ones to say what you do or don't do.  That is the cold hard facts of our disease, but Connie has given a great article for you and (us) to read, so take this information and all other solid info and do what you need to do. 
 
We are here for you and support you as best we can, not being physicians is hard when we see so much going on especially with this disease! Ugh.
Hugs, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 9:44am
Dearest Helen,
 
Thank you for your kind words, and even kinder support and caring over the past difficult months.  
 
I have been very fortunate to have been under the care of the most compassionate, brilliant oncologist who never gave up on me, and kept on trying to find something that would stop the demonic spread of the tumors that had taken up residence in my body.  She arranged for me to see the best specialists Canada had to offer and without hesitation to any of her world-class colleagues.  
 
I feel vulnerable once again and afraid my renewed well-being will be in jeopardy because she is leaving for a one year sabbatical in Singapore.  Our 'system' wrote me off, I would never have received the same care from another oncologist who did not understand the sneaky beast of triple negative the way she does.
 
I hope you are able to get an appointment if you wish because I will never forget the day she asked me if I trusted her (she knew I had trust issues with our system).  I told her I trusted her with my life - I never meant anything I have ever said more.....and I still feel the same way.  
 
Thank you for your loving welcome.
 
Connie
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 10:50am
Dear Diane,

I want to add my congratulations to your wonderful NED news...

I also second Pam's thoughts on getting a second opinion. I recently met a very bright Breast Medical Oncologist, Dr. Tatiana Prowell who is associated with Johns Hopkins Hospital's second opinion clinic. I also believe Dr. Lisa Carey at UNC and Dr. Ana Maria Gonzalez-Angulo at MD Anderson might be good resources.
Please send me a PM if you would like to talk and I will send you my contact info.

all the best,

Steve

Dear cg---

You made my month...actually my year...with your post..so, so, so nice to see you post...and on the money as usual.

Welcome home and I pray that Dr. Dent's absence will not be a problem for you health-wise. Certainly, the relationship you have developed with her is super, super special and probably cannot be duplicated but you have made it through incredible odds and our prayers and +++++ vibrations have been with you and shall be with you..

love back at you,

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 TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 11:07am
Oh Connie:
Thank you for telling me about Dr. Dent :(... I am truly going to be at the mercy of whomever knows more than we do for sure! 
 
I am so happy for you and your new beginning!  Enjoy and don't look back...and trust yourself.
Love Helen xoxo
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 2:37pm
There she is!  Connie you made me smile as soon as I realized it was really you, we have missed you so much.
Thank you for sharing this info with us..
Stage 2 2003
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 6:42pm
Connie,

Your post was the first thing I read this morning when I woke up.  It put a smile on my face and made my whole day brighter and happier.  Somehow, the world seemed balanced once 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 Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 8:05pm
Connie, so wonderful to see you post... I have missed you.. with Love autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2010 at 9:07pm
Connie!!!!!  Thank you so much for the card you sent when I was recovering from surgery.  That meant the world to me. 
It is SO good seeing you posting here.  We have missed you so very much.   If you feel like it, feel free to update us on your long sojourn into whatever dark and light spaces you have traveled 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2010 at 4:47pm
Dear Connie,

Thank you for returning to the boards. I believe Diane is in need of some answers that you can help shed light on. It is so generous and kind of you to add your input at this time in her journey.

I am so thankful that Diane is NED. I am so thankful that you are (hopefully) in a better place than a few months ago. You do not know what confidence and hope your posts here at this time have brought for an unknown number of people. We love you and have been in prayer for you for month.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2010 at 7:34pm
CONNIE!!!!! Thank you SOOOO much for the article. I remember when I came on these boards as a NEW stage IIB Triple Negative Girl.....It was YOU who first sent me a PM. You were right there with the information. I have thought SO MUCH about you. I remember that day I COULD not get out of BED. I was SO DEPRESSED. You told me to get up and YES I COULD DO THIS.......
Now you respond to my post, as you can see I am now a STAGE IV GIRL.....I still GET UP and tell myself.....I CAN DO THIS!!!!!!
Thank you for your knowledge and I too am praying that you are doing well. I KNOW it can be a CRAZY place to be. I continue to tell people....I AM LIVING WITH CANCER.....
I truly think I am LEANING towards CONTINUEING some form of chemo.
 
Steve....THANK YOU for your response. I will have to make some hard decisions in a couple of weeks. RIGHT now I am just gonna DANCE with NED....:}
I can always depend on all of you guys....THANKS EVERYONE!!!!!
 
Lots of Love,
Diane
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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