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Residual Cancer after Neoadjuvant, what to do?

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romnessprite2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2016 at 12:43am
Thats right. Ive seen so many prayers answered during this. Im sure He will help me figure this out too. Maybe Im just tired of feeling sick and dont want to do it anymore. The outcomes seemed so good inthe study. I will go back and read it again maybe it will inspire me to do more.
Thank you all for the support. I feel cyber hugged😋
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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dayle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dayle Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2016 at 12:07pm
hi all...i havent been on for some time not doing well and i have no idea what some of this stuff yall are talking about i just know im mastectic sp? and one more invasion of someplace and im not going to be well at all...i need prayers i need support..im lost and i feel like im running on a hamster trap and stuck and dying HELP!!!
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romnessprite2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2016 at 4:05pm
Dayle Im so sorry. I wish I could just hold you and let you cry it out! Where did the cancer come back? It is still treatable!SO DONT GIVE UP! You can still win this battle if you dont give up! There are still more chemo therapies they can try. They can send a sample of the tunor out for genetic testing and find out which treatment will work best! Hang on girl. Have a good cry then pick yourself up and fight!
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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romnessprite2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote romnessprite2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2016 at 1:56am
Dayle Im praying for you every day.I have asked other people to pray for you too. We really care about you. Hang on girl just hang on. Please let us know how you are.
Stage 3A. TNBC Diagnosed 9/15/15 2cm grade3. 4AC & 12taxl .double mastectomy3/8/16. 25 rads finished6/2. xeloda started 7/7/16 stopped xeloda because of side effects7/14/16. BRCA+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2016 at 2:02pm
Dear Dayle, I am so sorry to hear this latest. Know that I will be praying as well for you. Please know we are here for you, we care, deeply, about you. Please don't disappear, let us know how you are doing, no matter what you're feeling. Let us know what the doctors have said. Take life one moment at a time right now. Deep breath in, slowly let it out. Another deep belly breath. Feel my cyber hug for you, know that I will surround you with prayers right now. Love, Jackie
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cindielou Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2016 at 4:57pm
Dayle,
Take a deep breath. You are not alone and so many of us are praying for you. I am sure you are reeling from your recent diagnosis. You can do this!! There are so many treatments and doctors out there. Remember that God will not forsake you. We all want to do whatever we can for you...please let us know.
Much love
Cindie
Cindie 49 yrs. old; diag.7/15; IDC Stage 2b; 2.6cm tumor, 1 affected node; AC+Taxol, dmx, PCR!!, 28 rads; finished 4/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KK1722 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2016 at 12:53am
Hi again, Everyone,

You guys were so helpful to me back on May 26th, just before my mastectomy, so I thought I would check back in for further advice now that my surgery results are in. Back then I was finishing up with NAC chemo -- AC+T and a sonogram had revealed a 1.2 cm residual tumor. The AC had seemed to shrink the tumor initially, but the Taxol didn't do much at all.

Following my June 30th double mastectomy, we learned that the recent sonogram had been perfectly accurate. I had a 1.2 cm residual tumor with high grade disease. In fact, the small amount of hormone-positive I'd had at initial diagnosis had disappeared, leaving only completely hormone-negative disease behind. And I haven't gotten anyone to give me an actual number on the cellularity, but apparently it was very high.

Additionally, there is ongoing confusion and uncertainty with regard to whether my residual tumor was HER2-positive. (Don't get me started. I'm extremely frustrated! I'm two months out from surgery and we're still debating the actual pathology of my residual tumor! They're working on that, supposedly.) Anyway, I've already done two rounds of Herceptin, which is designed for HER2-positive, as you probably know, but my cancer center is participating in a trial where they're giving Herceptin to Her2-equivocals who were negative on FISH. Since I've been equivocal on both IHC tests, whether I'm actually FISH positive or not, they think Herceptin should be given. All the MOs have been consistent on this, so I'm taking the Herceptin without question.

So here's my big debate now: I've recently switched providers, from a local med onc (MO) who did all my NAC chemo, to a bigger cancer center. There are benefits to this bigger cancer center, but now I'm afraid they're too conservative and set into the Standard of Care and I'll be missing out on necessary treatments.

My prior MO recommended treatment involving Herceptin, plus Xeloda (at my request) and an AI (instead of Tamoxifen). (Again, I only had a little bit of hormone positivity to begin with and my residual had none so it's not anticipated that hormone therapy will do much for me, whether it's Tamoxifen or Aromasin.)

My new MO has me on Herceptin, but won't take the bold steps the prior MO was willing to take on the other meds. First, she wants to do Tamoxifen instead of Aromasin because I'm pre-menopausal. But I just want the med that's more effective, and I've read AIs are a little better than Tamoxifen, even on pre-menopausal women. I am not going to have children, so I am completely fine with shutting down my ovaries.

More significantly, I'm very concerned about missing out on Xeloda. My prior MO was willing to give it to me after round-tabling my case with other oncs, so they obviously felt it was worth a shot. But my new MO said she cannot prescribe Xeloda because it hasn't been proven yet and is too risky. (Basically, she seems to stick strictly to the SOC and her facility isn't accepting Xeloda as the SOC yet.)

I feel like I'm in a terrible position of trying to decide who to go with. My gut tells me to stick with the new cancer center overall, but I'm also feeling like missing out on Xeloda is a huge risk.

Any thoughts are appreciated! Wishing the best for all of you!

Kelly

Dx 1/16: IDC TNBC stage IIB, 5.1cm, 0/3 nodes, Gr3, Ki67- 99%.
37 years old. BRCA neg.
NAC - AC/T
Dbl MX June 2016. RCB II.
1.2cm residual high grade tumor.
RADs 9/16-11/16
Adj. Tx - Unknown

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Rsprite3 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rsprite3 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2016 at 3:04pm
Wow thats a tough call! My onc said i could still take xeloda up to six months after the standard treatment was over and it would still be effective. So dont fret too much about it. You can still do it. Some other patients on this website Tulips did xeloda after her other treatments. Go to the main webpage here and in the left corner you can search for peopl. Look up Tulips. She posted a lot of research links that might help you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 21 2016 at 5:23pm
Kelly (KK1722),

I've always questioned why they don't give chemo if residual tumor remains after surgery.  How is a 1.2 high grade tumor any different from someone that had surgery first and the tumor removed (same size)?  In this situation chemo would be given.  I realize some institutions will not deviate from SOP or NCCN guidelines making it difficult for someone like you who wants adjuvant chemo.  Your new MO may not budge, but possibly you could share information that may help change her mind?  Here are a few links to threads discussing this subject:






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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