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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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lynnj3 | @lynnj3 | Aug 19, 2023
In reply to @eurojones2 "Hi @lynnj3 I always ate protein (eggs, avocado, yogurt) for breakfast, nuts and fruit for snacks..." + (show)
@eurojones2

Hi @lynnj3
I always ate protein (eggs, avocado, yogurt) for breakfast, nuts and fruit for snacks and protein (chicken, beef, whatever I could stomach) with vegetables and rice or potatoes. I did lose a little weight at first, but then when I had AC, I gained 20 lbs from the steroids. I would ask your doctor and remind him/her that you lost 15 lbs in 3 weeks. He might have suggestions to help too and also, it may be a side affect of one of the drugs that may be worth looking into. I did have BOOST protein drinks after chemo to help with energy and boy did I think they tasted good and I got 20 - 30 mg of protein per shake. It may be time now to splurge a little and eat some ice cream or cheese or those more high calorie foods? Good luck!! p.s. I lost the 20 lbs after chemo so I'm back to my normal weight...

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Thank you so much for the suggestions. I did request to see a nutritionist for some suggestions like just how much protein I need. And a few other questions I see them next week. I start my second round of keytruda and chemo 8/24. And see the surgeon on 8/29 . So far the side effect have been minimal so lucky I guess. Hugs have a good day y’all

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seathink | @seathink | Aug 19, 2023

I got a cookbook when I started treatment - "The Cancer Fighting Kitchen" - which had tons of great recipes and suggestions for eating during treatment, how to account for loss of appetite and change in taste.

The recipe we used the most was for "Anytime Bars" which were great for on the go/infusion center snacks.

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1 reply
leolion811 | @leolion811 | Aug 19, 2023
In reply to @bpknitter53 "Here’s a photo, sorry it took so long I was challenged on how to do from..." + (show)
@bpknitter53

Here’s a photo, sorry it took so long I was challenged on how to do from my iPad, I hope the photo is helpful.

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Thank you 😊

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eurojones2 | @eurojones2 | Aug 20, 2023
In reply to @seathink "I got a cookbook when I started treatment - "The Cancer Fighting Kitchen" - which had..." + (show)
@seathink

I got a cookbook when I started treatment - "The Cancer Fighting Kitchen" - which had tons of great recipes and suggestions for eating during treatment, how to account for loss of appetite and change in taste.

The recipe we used the most was for "Anytime Bars" which were great for on the go/infusion center snacks.

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Cookbooks really help! I was given 3, What to Eat during Cancer Treatment, Cooking Through Treatment to Recovery, and Eating Well Through Cancer.

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eurojones2 | @eurojones2 | Aug 20, 2023
In reply to @lynnj3 "Thank you so much for the suggestions. I did request to see a nutritionist for some..." + (show)
@lynnj3

Thank you so much for the suggestions. I did request to see a nutritionist for some suggestions like just how much protein I need. And a few other questions I see them next week. I start my second round of keytruda and chemo 8/24. And see the surgeon on 8/29 . So far the side effect have been minimal so lucky I guess. Hugs have a good day y’all

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Good luck with your continued treatment and your appointment with your surgeon! Hugs to you!!

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thielmann1 | @thielmann1 | Aug 20, 2023
In reply to @eurojones2 "@thielmann1 I was diagnosed with triple negative breast cancer on Sep 20, 2023. I was seen..." + (show)
@eurojones2

@thielmann1
I was diagnosed with triple negative breast cancer on Sep 20, 2023. I was seen quickly at the Mayo as it's a very aggressive cancer. The treatment follows the the KEYNOTE-522 study. It was a study evaluating the combination of (CHEMO) consisting of weekly paclitaxel 1 + carboplatin (AUC1. 5 weekly or AUC 5 every 3 weeks) followed by AC every 3 weeks, with or without pembrolizumab in a 2:1 randomization. In laymen's terms it's about 5 months of chemo, the first 12 weeks it's once a week and then the last 4 treatment is every 3 weeks. You will most likely have chemo before surgery unless you tumor is very small. Mine was almost 4 cm so I had chemo first to shrink the tumor and the surgery. I was given KEYTRUDA, an immunotherapy drug at the end of my 12 weeks. You do Keytruda every 3 weeks for about 9 months. I had a double mastectomy only because I tested positive for the BRCA1 gene mutation. Before I found out I was positive for BRCA1, the surgeon was going to do a lumpectomy. Depending on how you respond to chemo and how much the tumor shrinks and if any cancer remains after surgery, you might be finished with treatment or you may have to take a pill for 6 months to a year to prevent cancer recurring. Sometimes the recommend radiation depending on if cancer is in lymph nodes or when you have a lumpectomy. Your oncologist and surgeon will help you better understand your treatment as you will soon discover, everyone is different. I can tell you though, that Keynote 522 is what they follow for triple negative breast cancer. Good luck and I will be praying for you! One day at a time!

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Thank you for your reply and the details of your treatment. Unfortunately, the oncologist I had did not try chemo before the surgery. Had this happened, my tumor would have disappeared and surgery could have been avoided. It was a complicated surgery followed by radiation, which left my chest wall fairly tight and paralyzed. After he went on medical leave, another oncologist was assigned to me at Stanford and sent my tissue to be further diagnosed. The results showed that I had 11 mutations which put me in another category for chemotherapy. He put me on the correct chemo medication, and the leftover small tumors just disappeared. I am not on any medication at this point as I don't have any active breast cancer going on at the time. Best of luck with your breast cancer.
Nancy

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lynnj3 | @lynnj3 | Aug 21, 2023

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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1 reply
cmdw2600 | @cmdw2600 | Aug 21, 2023
In reply to @thielmann1 "Thank you for your reply and the details of your treatment. Unfortunately, the oncologist I had..." + (show)
@thielmann1

Thank you for your reply and the details of your treatment. Unfortunately, the oncologist I had did not try chemo before the surgery. Had this happened, my tumor would have disappeared and surgery could have been avoided. It was a complicated surgery followed by radiation, which left my chest wall fairly tight and paralyzed. After he went on medical leave, another oncologist was assigned to me at Stanford and sent my tissue to be further diagnosed. The results showed that I had 11 mutations which put me in another category for chemotherapy. He put me on the correct chemo medication, and the leftover small tumors just disappeared. I am not on any medication at this point as I don't have any active breast cancer going on at the time. Best of luck with your breast cancer.
Nancy

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My TNBC was four years ago so protocol may have changed since then, but my tumor was gone as a result of chemo and I still had lumpectomy and radiation as was recommended by my oncologist, surgeon and radiologist. I don’t know if that makes you feel any better.

Best wishes to you, Cindy

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thielmann1 | @thielmann1 | Aug 21, 2023

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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1 reply
mkb4435 | @mkb4435 | Aug 23, 2023
In reply to @thielmann1 "Thank you for your reply. Since this surgery was difficult because they had to take part..." + (show)
@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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