Not responding to treatment
Hello. I am new to this group and was curious if anyone else has had a similar experience with their breast cancer fight. For full back story, I was first diagnosed with DCIS back in May of 2020. I opted for double mastectomy because they said it was the best chance of never having to deal with it again. My margins were extremely close, less than 1mm. But they said it was just DCIS and they would watch me closely so I should be fine. While, fast forward 4.5 years and in September of 2024, I found out it was back and it was Triple Positive Her2. The initial plan was your basic treatment for this. Chemo/her2 target therapy for 6 months, followed by surgery. I started the chemo/her2 in September (I was being treated with TCHP chemo, however I had an allergic reaction to the docetaxel and that part was replaced with abraxane). About half way through the 6 months, testing showed that the tumor was not responding at all. They decided to just complete the chemo regimen as planned and hope that it would do something in the next three months before surgery. In March, I underwent another mastectomy, and it was discovered that not only did the tumor not shrink at all, but it had also spread to my lymph nodes during the chemo treatment. Unfortunately they did not get all the cancer with the mastectomy and I had positive margins as well. In the next two months, I had two more surgeries to remove more skin to try to get the remaining cancer cells, both unsuccessful and with positive margins again.
The plan now is to just move me to radiation, begin estrogen blockers, and 9 months of kadcyla and capecitabine. I'm wondering if anyone else has had a similar experience with no responser to chemo, and unsuccessful surgery/surgeries, and how you moved forward. Thankful for any advice or encouragement!
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I am triple positive also, and my two tumors did not respond to chemo either, but I did have successful surgery. I had Taxol, Herceptin, and Perjeta. Everyone talks about what a miracle drug Herceptin is, so I was really shocked and saddened to see that it did nothing for me. My surgical margin was 2 mm, which seems really small to me, but they said it's enough. I went on to complete 14 rounds of Kadcyla but since it is also Herceptin based I don't know if any cells I had floating around responded to it. I did not have radiation and am currently on anastrozole and zometa.
I hope that radiation does its job for you! I'm so sorry you are in this position, but you are not alone in not responding to chemo.
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Thank you for your response. They seem some what confident the radiation can get what they aren't able to get from the surgeries. I agree I heard so many great things about Herceptin it was a little surprising to see it not do anything. Especially when I had some close friends that had a great response to the same treatment.
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@jully824 - Welcome to Breastcancer.org. We're so sorry you’re going through all of this, but glad you found us and decided to reach out. As you can already see, you’re not alone here.
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I am a 2 time breast cancer and 4 time endometrial cancer patient. When my endometrial cancer returned the first time they put me on Letrozole which did nothing. After about 3 months of the tumor continuing to grow I insisted on going to the next step, which I was told would be chemo. I went through seven rounds of Paclitaxel and Carboplatin which did nothing but give me blood clots and neuropathy in my fingers, toes, hands, and feet. The original goal of chemo was to shrink the tumor and remove it surgically. After the chemo the endometrial cancer had grown enough to be inoperable due to it's location so I was given radiation. I had 15 doses over 3 weeks and it killed the tumor. I've had 2 more endometrial tumors pop up and we killed them both quickly with radiation. I personally trust the radiation over anything else to kill these new cancer spots that I keep getting. RIght now my breast cancer is back. I've had surgery and they made me go through chemo first cause this new breast cancer is aggressive and was in 16 out of 18 lymph nodes that were removed with surgery.They say the chemo will kill any of the cancer anywhere in my body, but I still don't trust the chemo to work and I'm looking forward to getting radiation later this summer. I also insist on having a PET scan every 3 months to catch any new cancer spots ASAP so we can kill the off quickly. Good luck, I hope your new treatment plans does the trick for you.
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Thank you for this. This makes me feel much more confident in the radiation starting in two weeks. They did tell me last week that I'll be getting pet scans every 3 months for a few years so they can be sure its staying stable.
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