Triple Negative Breast Cancer: What treatments are you having?

Posted by thielmann1 @thielmann1, Dec 9, 2021

I have just been diagnosed with Triple Negative Breast Cancer after having Estrogen Positive Breast Cancer for 21 years. Is anyone familiar with this diagnosis and treatment that you are having for it?

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@drummergirl

Your chemo regimen seems more extensive than some. What size was your tumor and was there any spread? I am sure you are getting the best at Mayo.

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It was grade three for aggressiveness but had not spread to lymph nodes. Triple negative is already hard to treat. By the time of surgery it wasn’t gone so i had to do radiation and am just finishing 6 months of oral chemo to prevent reoccurance. Or cut reoccurance in half. It’s still 15-20%.

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@lynnj3

My tumor was 3.7cm and i discovered recently from a lymph node Bx that the lymph node was negative. I currently at St. Luke’s regional cancer treatment center on Duluth. Because this is such a fast growing Ca. and their normal protocol. Have others had less aggressive TX with good results?

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Sometimes age is a deciding factor. I was 72 with 1.8cm and no nodes affected. I could not get “red devil” I was told due to age. As far as I am concerned, the more aggressive the better. Sounds like you are getting good care.

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@drummergirl

Your chemo regimen seems more extensive than some. What size was your tumor and was there any spread? I am sure you are getting the best at Mayo.

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My tumor was 3.7cm and i discovered recently from a lymph node Bx that the lymph node was negative. I currently at St. Luke’s regional cancer treatment center on Duluth. Because this is such a fast growing Ca. and their normal protocol. Have others had less aggressive TX with good results?

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@sharonemma

I was recently diagnosed TNBC. Mayo’s standard was Taxol/Carboplatin/Pembrolizumab 1xweek fir 12 weeks,
then Adriamycin/Cytoxan/Pemrolizumab 1X every 3 weeks x 4 times. So another 12 weeks.
60% chance of complete pathological result (meaning cancer is gone.)
Wait 4-6 weeks and do surgery.
Radiation just depended on if lymph nodes or size of tumor (over 5cm is yes)

I decided to join a I Spy 2 clinical study. Which delays starting chemo as they take another biopsy and send it to the study group to get recommended chemo/Immuno combo. Takes two weeks. The waiting is a mental game.
Please keep in mind everyone’s situation is different and BC seems very complicated in the variety of treatment options.

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Your chemo regimen seems more extensive than some. What size was your tumor and was there any spread? I am sure you are getting the best at Mayo.

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@seathink

Doing really good, but took a long while. I was Stage 3B with lymph nodes, chest wall, and skin involvement.

After the chemo/surgery/radiation process plus a year of Keytruda from 2020-2021 I did a year of Xeloda, 1 week on and 1 week off for reoccurrence prevention. Last summer I was good on .my PET/CT so now I just get bloodwork every 3 months, and alternate mamo or MRI every 6 months with a yearly CT.

He's now 3 and 5 months – so much fun. I had some radiation side effects last year, so this year I'm finally able to spend some days with him without treatments and doc appts every week and it's been awesome. 😊

It was so tough, and even stuff that now make my life really great, like my reconstruction, were sooo frustrating at the time. It's a crazy journey. Hugs, hugs, hugs.

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Even though it’s a long journey I’m encouraged by you story. Blessings to you and you family.

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@lynnj3

Thanks for the feed back.
2020🙏 how are you doing now? What was your status? I’m stage 3 with no metastasis to the lymph nodes
Are you taking any meds to prevent recurrence?
Also how old is your baby (bright spot in your life I bet)’

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Doing really good, but took a long while. I was Stage 3B with lymph nodes, chest wall, and skin involvement.

After the chemo/surgery/radiation process plus a year of Keytruda from 2020-2021 I did a year of Xeloda, 1 week on and 1 week off for reoccurrence prevention. Last summer I was good on .my PET/CT so now I just get bloodwork every 3 months, and alternate mamo or MRI every 6 months with a yearly CT.

He's now 3 and 5 months – so much fun. I had some radiation side effects last year, so this year I'm finally able to spend some days with him without treatments and doc appts every week and it's been awesome. 😊

It was so tough, and even stuff that now make my life really great, like my reconstruction, were sooo frustrating at the time. It's a crazy journey. Hugs, hugs, hugs.

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@seathink

I started chemo in Aug, too (2020) for TNBC. I bought a wig but ended up using hair coverings until my hair grew out. It was easier with my baby and with the heat that way. Friends bought me head coverings over the Internet and there was a free basket at the infusion center.

I wore the wig out a couple of times in the fall and winter. If I had been in a colder spot I would have worn it more, I think. Our cancer wig shop was closed all through my treatment because of lockdown, but bought a wig at a costume shop once non-essential shopping was allowed again.

Good luck with the shave today! I actually really was happy when I finally got it all off – a lot less itching and no more micro hairs everywhere.

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Thanks for the feed back.
2020🙏 how are you doing now? What was your status? I’m stage 3 with no metastasis to the lymph nodes
Are you taking any meds to prevent recurrence?
Also how old is your baby (bright spot in your life I bet)’

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@lynnj3

I start my second round of chemo and keytruda 8/24 . I’m now experiencing hair loss, any suggestions on shampoo and conditioner to use before and after. I plan to have what’s left shaved on 8/28 , do y’all use a wig or just head coverings.

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I started chemo in Aug, too (2020) for TNBC. I bought a wig but ended up using hair coverings until my hair grew out. It was easier with my baby and with the heat that way. Friends bought me head coverings over the Internet and there was a free basket at the infusion center.

I wore the wig out a couple of times in the fall and winter. If I had been in a colder spot I would have worn it more, I think. Our cancer wig shop was closed all through my treatment because of lockdown, but bought a wig at a costume shop once non-essential shopping was allowed again.

Good luck with the shave today! I actually really was happy when I finally got it all off – a lot less itching and no more micro hairs everywhere.

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@thielmann1

Thank you for your reply. Since this surgery was difficult because they had to take part of my back dorsal flap to close the wound, it was a bit invasive. the radiation following caused my chest wall to tighten up as it was a second radiation on top of this invasive surgery. I live with an uncomfortable tight chest wall daily that has affected my quality of life. I am still in process of accepting what happened and moving forward in my life. despite the discomfort. Myofascial massage has not worked, nor lazer therapy and 2 other therapies I have tried. Qijong seems to be a good therapy for my mind, body and soul right now. Best of luck to you, Nancy

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I'm sorry to hear about all you have been through. When I read this, I can better appreciate the things my own surgeon has said, that it is important to treat the cancer enough but not over-treat it. (I'm not passing judgment on your providers, just considering it in light of my fears of having been under-treated.) I did not have chemo before surgery – or after. I have not had any radiation. I was fortunate to have a small tumor and no lymph node involvement. I'm assuming that your TNBC was more advanced than mine, but I am regularly struck by how differently oncologists and surgeons view treatment when I read others' stories. There will always be risks, surgery has them, chemo has them, radiation has them, doing nothing has them. While there is a lot of information that can go into calculating the relative risks of each of these choices, in the end, we don't know what will happen until it happens. Many blessings to you as you journey through these hard times.

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Thank you for your reply. Since this surgery was difficult because they had to take part of my back dorsal flap to close the wound, it was a bit invasive. the radiation following caused my chest wall to tighten up as it was a second radiation on top of this invasive surgery. I live with an uncomfortable tight chest wall daily that has affected my quality of life. I am still in process of accepting what happened and moving forward in my life. despite the discomfort. Myofascial massage has not worked, nor lazer therapy and 2 other therapies I have tried. Qijong seems to be a good therapy for my mind, body and soul right now. Best of luck to you, Nancy

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