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SamKatVic
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Topic: Chemo after Neoadjuvant+Surgery+Radiation Posted: Mar 06 2018 at 9:10pm |
First time caller, long time listener.
Recovering from lumpectomy after the usual A/C + T. Pathology on the tumor was 60% cellularity. Margins clear, node biopsy was negative.
Radiation set to start after recovery from surgery, in about 3 weeks.
Oncologist wants me to start platinum-based chemo after completing radiation to reduce risk of reoccurance.
Has this course of treatment been proposed to anyone? Anyone try it?
Not sure what to do next, and this was not part of the original plan.
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Kellyless
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Posted: Mar 07 2018 at 1:11pm |
What a stressful thing to hear at this point in your treatment! If I am y ask for a bit more info: How big was it to begin with and then when it was removed? Did you test positive for any breast cancer related gene mutations? Is it Carboplatin they're suggesting? Lastly, what were the reasons the Dr. have for this recommended treatment? If you don't mind sharing this info, if course. It's not the normal scenario I've seen with the info you've given so far, that's why I ask these questions, to see what maybe triggered her to suggest this. I would get a second opinion from the best TNBC specialist at an NCI rated cancer facility before making any decisions. If you need suggestions let us know where you are. It's a simple thing to do and can be life changing (both times I've had TNBC a second opinion changed my treatment).
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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SamKatVic
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Posted: Mar 07 2018 at 1:35pm |
Tumor was suspected to be 2.9 at the time of the MRI biopsy, all genetic testing was negative. The tumor was removed on Feb 22.
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Kellyless
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Posted: Mar 07 2018 at 6:23pm |
My guess is that she's not happy with your response to the chemo, that she was expecting a greater response to the strength and amount you did. She's perhaps concerned that with the response you had, if there's any cells that escaped, the chance of the chemo you did having caught them feels risky. And it's a huge risk, TNBC scares the sh!t out of oncologists with good reason. Did they do scans while you were in chemo to check for reponse? Not that scans are very accurate.... This last time my scan at the end of chemo showed I still had 20% of my original 2cm tumor and my 2nd opinion MD Anderson Dr wanted me to do a few rounds of CMF - a pretty tough chemo. I was sick as a dog this time and just....ugh. My primary Dr. here agreed with me, I was DONE with chemo, I'd have the surgery then do a pill form chemo after surgery for 6 months. Or if by some miracle the 20% showing was not cancer I was DONE - no more chemo! There was no cancer left - the CMF would've been unwarranted. I'm still so glad for my second opinion tho! He suggested a stronger chemo than my primary Dr. did, and it got me to the positive outcome I got. All this rambling is to say - get a second opinion - get a third opinion if you can get to it -every expert that evaluates your situation you will learn something from. What about a lesser pull form of chemo - why not that? Were you given options? There ARE options, you should be offered all of them and given the pros and cons of each one. Your doctor should have given you a very explicit reason for her suggestions, all of the "why's" on her saying you need chemo, and all of the "why's" on her choosing THAT chemo and not others. If she didn't, ask her that! And that's just another reason to get more opinions. Again - I'm so sorry this is where you are! It about shoved me and my husband over the edge when he said I should do more chemo....Those were awful days. You hang in there, you will get thru it!
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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SamKatVic
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Posted: Mar 08 2018 at 1:26pm |
The other under discussion is capecitabine. Trying to get some understanding of any differences between the carboplatin and the capecitabine for Triple Negative, all genetic testing negative. Any documented studies comparing the efficacy of either.
This was just such a curveball.
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Kellyless
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Posted: Mar 08 2018 at 4:40pm |
That's the pill form of chemo I was planning on doing post surgery if I'd not gotten the complete response. There's threads here on this site discussing it numerous times, search for Xeloda. Or Adjuvant chemo - it is something we've discussed here repeatedly. There are studies on both in your situation - I believe the Xeloda trial was called Create X? Again, your doctor should provide you the study information on every option you have, along with her opinion on each of them. Actually, this very situation should be discussed with every TNBC patient at the beginning of treatment - what will be the next step if you don't get a complete response. My local doctor did that - My 2nd opinion Dr. said, "whoa whoa! Let's not get ahead of ourselves!" I believe information is power,these are all life changing therapies, you deserve ALL of the information available to help you make decisions. That's why a second opinion is so very important as well.
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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123Donna
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Posted: Mar 08 2018 at 6:58pm |
Please read this thread about an important study:
Xeloda improves survival for some breast cancer patients who do not achieve a pathological complete response to chemotherapy A drug called Xeloda can extend the lives of some women whose breast cancer is not wiped out by standard treatment, a new clinical trial finds. Oncologists said the results are "practice-changing." "This drug is already approved, and we've been using it for a long time in cancer treatment," said Dr. Stephen Malamud, an oncologist at Mount Sinai in New York City. Xeloda (capecitabine) is a pill, so it's easy to take and is "much less toxic" than standard chemotherapy, noted Malamud, who was not involved in the new research.
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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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SamKatVic
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Posted: Mar 09 2018 at 11:44am |
Thanks 123Donna (Go Cards!)
Signed up for a clinical trial - Carboplatin vs Xeloda after surgery without a complete response.
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123Donna
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Posted: Mar 09 2018 at 12:23pm |
SamKatVic,
Sounds like a great clinical trial. We've seen the research about Xeloda and also know many TNBCers respond well to Carbo. It will be interesting to see the results and if one arm has better results over the other arm of the trial.
Donna
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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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SamKatVic
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Posted: Mar 12 2018 at 9:17am |
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sassychelle
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Posted: Apr 16 2018 at 7:36pm |
So glad to find this thread! I got the more chemo surprise today. Doc wants to do four months of Carboplatin, once a week for three weeks, then take a week off, then repeat. I thought for sure that radiation was the end of this journey and now I'm just stunned. My tumor was not very responsive to chemo, though. Was supposed to do 12 Taxol, but we stopped it after 3 rounds because an MRI showed my tumor was rapidly growing. So I did four cycles of AC and then had modified radical mastectomy. Path report showed 4.8 cm tumor remaining and cancer in 1 of 9 lymph nodes removed. Doc maintains that I'm in remission, but he wants to make sure we're targeting any stray cells that may be lingering in my body. I guess my confusion is - if the tumor didn't respond well to chemo anyway, what are the chances of any stray cells responding to it? But I'll of course kick myself if I decline this round and have a recurrence. I want to give myself the best chance of being "one and done" with this cancer thing. Ugh.
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SamKatVic
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Posted: Dec 02 2019 at 2:05pm |
Next week is my one year follow-up - so far, all is well.
Good luck to anyone reading this.
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sophie
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Posted: Dec 02 2019 at 11:07pm |
good for you and congratulations for 1 year anniversary. How did you Tolerent carboplatin and xeloda . Do you have any lower ER+ in your tumor? Are you basal like TNBc?
Hug you
Sophie
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SamKatVic
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Posted: Dec 03 2019 at 9:28am |
Carboplatin was easier than the A/C, but its still chemo. But I do have to say the chemo after the radiation wasn't easy.
But I'm doing well, 1 year scan set for next week. Will post any findings.
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SamKatVic
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Posted: Jun 11 2020 at 5:55pm |
Just had my 18 month scan - all is still well.
I have graduated to getting a scan "once a year".
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123Donna
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Posted: Jun 15 2020 at 12:16pm |
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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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strongtogether
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Posted: Jun 16 2020 at 4:44am |
thats great news
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SamKatVic
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Posted: Apr 27 2021 at 9:06pm |
3yr follow-up today - still going strong
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Elaine55
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Posted: May 27 2021 at 12:14am |
So you went through with the clinical trial? What chemo did you receive and for how long?
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SamKatVic
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Posted: May 27 2021 at 3:49pm |
The pre-op Chemo was the Standard A/C followed by T. Post-op Chemo was Carboplatin. Others in the trial were given Xeloda. Good luck!!!
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