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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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lnlowe70 | @lnlowe70 | Apr 15, 2023
In reply to @dolphina3 "Hi I am on the zometa infusion, too. My question is after TNBC how often are..." + (show)
@dolphina3

Hi I am on the zometa infusion, too. My question is after TNBC how often are your check ups after treatment is done. I was recently told somd are doing virtual appointments which is crazy. I want somebody checking my masectomy sight because I could miss something. My appts so far have been with the Dr.
Good luck to all.

Thank you

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I agree that a virtual appointment would leave me feeling even more alone than I feel now. Somehow it seems like just listening to my heart and lungs is such a minimal checkup, but at least we are in the same room! I am 18 months out from my surgery, and seeing my oncologist every three months with a Zometta infusion every six months (my 3rd infusion is in three weeks, and then there'll be one more next fall.) My oncologist said the Zometta will reduce the chance of a return cancer by 1%--!!--but I'll be glad to take any lower risk, however small!

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1 reply
thielmann1 | @thielmann1 | Apr 15, 2023
In reply to @miles5513 "I have metastatic triple negative breast cancer. I am 77 yrs. old. What treatments did anyone..." + (show)
@miles5513

I have metastatic triple negative breast cancer. I am 77 yrs. old. What treatments did anyone who has this diagnosis receive? I would be grateful for any replies. bemar23

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I have triple negative breast cancer, that was estrogen positive for 20 years. It was a bit of a surprise. My doctor has me on Xeloda; five breast cancer spots disappeared. I’m not feeling much in the way of side effects. I should also tell that my doctor sent in tissue to a foundation to learn more about tumor and also found that I have 11 mutations, which also affects the type of medication i take. Kind of lengthy reply!!!

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rahrah6263 | @rahrah6263 | Apr 15, 2023
In reply to @colleenyoung "Hi @miles5513, I moved your question to this existing discussion on the same topic: - Triple..." + (show)
@colleenyoung

Hi @miles5513, I moved your question to this existing discussion on the same topic:
- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

In addition to @seathink, you can easily connect with other members talking about triple negative breast cancer treatments, like @thielmann1 @kk57 @olg1 @dolphina3 @lnlowe70 and many more. Click the link above to read through previous posts.

How are you tolerating Keytruda so far? Or was today your first infusion?

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Doing very well with Keytruda. My magnesium is 1 point lower than my doctor would like so I have an infusion before treatment.

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rahrah6263 | @rahrah6263 | Apr 15, 2023

Hello everyone
I was diagnosed 3/15/2023 with Stage 1a TicNo Tnbc local reoccurrence after 5 1/2 year of being cancer free. It came back in the same area of the lumpectomy in 2017 and a 1.7 cm behind the nipple. Had a PETSCAN/CT all came back negative except in the breast. Also had a MRI with contrast. My treatment consists of Carboplatin, Abraxine and Keytruda, 4 cycles every 21 days with surgery following all treatments. I believe I will have one more cycle after surgery to clear up any remaining traces in the system. The most frightening part of this whole thing is that there is a shortage of Carboplatin everywhere! My doctor called my on 4/11 and said they may not have it for my treatment on 4/14 but name was first on the list. When I arrived for my treatment they were able to get it for me but could not guarantee they would have it for my next treatment. I am halfway through my treatments with no solution to what will happen next. This is very frustrating but I am going to remain positive! Hopes this helps
Take care.

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2 replies
dchamber96 | @dchamber96 | Apr 14, 2023
In reply to @kk57 "Greetings @thielmann1. I’m sorry to hear about your diagnosis. I was diagnosed with triple negative breast..." + (show)
@kk57

Greetings @thielmann1. I’m sorry to hear about your diagnosis. I was diagnosed with triple negative breast cancer last February. I had a DCIS (Stage 0) and an invasive (Stage 1A). The not-so-good news about triple negative is that it is usually more aggressive/faster growing and usually does not respond to hormone-related therapies. While my cancers were caught early, they were also grade 3, and I had a very high Ki-67. These are both more aggressive indicators as well. For me, it just meant I didn’t want to delay moving forward with treatment.
The good news is there is no reason for me to have aromatase inhibitors post treatment, which is nice to be able to avoid those side effects.

Due to the aggressive nature of my tumors, and especially the invasive, Mayo Clinic had me in chemotherapy within two days. Thus, by the time I had surgery, there were no active cancer cells in my breast tissue or lymph nodes. I had never heard of having the chemotherapy first before surgery, but this seemed like a great approach to me. Something to consider with your medical team, if appropriate.

FYI. Other factors played into my surgical decision - unrelated to being triple negative and more related to avoiding future cancers. I have a strong family history of breast cancer. I’m 64 years old. I had a previous atypical lobular hyperplasia (ALH), a future cancer marker. While I didn’t test positive for the BRCA gene, I do have another potential genetic marker (STK-11). I also preferred to avoid radiation. Thus, I opted to have a double mastectomy with reconstruction. I am halfway through my reconstruction, and am at peace with all my decisions. They found several other small DCIS and ALH In the breast tissue they removed. I would likely have been back with another cancer had I gone with a lumpectomy, So this was the right decision for me. Everyone is different. And your decision will be the right decision for you.

So again, to me triple negative means don’t delay, and it also means hormone related therapies are not effective/necessary. Forge ahead with your medical providers. Prayers you find the best treatment for your situation. Blessings to you on this journey so many of us travel.

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I also have triple neg breast cancer and started chemo first in January. I am in my 5th cycle and will be done mid-June. Then surgery and potentially reconstruction. Can you tell me what kind of reconstruction you chose and how you decided?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 14, 2023
In reply to @miles5513 "Thank you so much for sending your diagnosis and treatments for the Stage 3 Triple Negative..." + (show)
@miles5513

Thank you so much for sending your diagnosis and treatments for the Stage 3 Triple Negative Breast cancer. I was in treatment this am (April 14th) with Keytruda, a 30 min. drip every 21 days. I will be having a biopsy of cancer in my liver. Will reply when I have biopsy & results. bemar5513

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Hi @miles5513, I moved your question to this existing discussion on the same topic:
- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

In addition to @seathink, you can easily connect with other members talking about triple negative breast cancer treatments, like @thielmann1 @kk57 @olg1 @dolphina3 @lnlowe70 and many more. Click the link above to read through previous posts.

How are you tolerating Keytruda so far? Or was today your first infusion?

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1 reply
miles5513 | @miles5513 | Apr 14, 2023
In reply to @seathink "Hi bemar23, I was diagnosed with stage 3B triple negative breast cancer two and a half..." + (show)
@seathink

Hi bemar23,

I was diagnosed with stage 3B triple negative breast cancer two and a half years ago when I was 38, and had some treatments that metasastic breast cancer patients have.

Besides chemo and radiation and surgeries, the treatments I had that were specific to metastatic TNBC were a year of keytruda and a year of xeloda - the keytruda concurrent with chemo and then surgery and radiation, and xeloda I started during radiation as an oral chemo that would specifically target any cancer that was in the bloodstream.

Hope others are able to chime in too for more specifics, but if you have any questions for me I'm happy to help.

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Thank you so much for sending your diagnosis and treatments for the Stage 3 Triple Negative Breast cancer. I was in treatment this am (April 14th) with Keytruda, a 30 min. drip every 21 days. I will be having a biopsy of cancer in my liver. Will reply when I have biopsy & results. bemar5513

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1 reply
seathink | @seathink | Apr 14, 2023
In reply to @miles5513 "I have metastatic triple negative breast cancer. I am 77 yrs. old. What treatments did anyone..." + (show)
@miles5513

I have metastatic triple negative breast cancer. I am 77 yrs. old. What treatments did anyone who has this diagnosis receive? I would be grateful for any replies. bemar23

Jump to this post

Hi bemar23,

I was diagnosed with stage 3B triple negative breast cancer two and a half years ago when I was 38, and had some treatments that metasastic breast cancer patients have.

Besides chemo and radiation and surgeries, the treatments I had that were specific to metastatic TNBC were a year of keytruda and a year of xeloda - the keytruda concurrent with chemo and then surgery and radiation, and xeloda I started during radiation as an oral chemo that would specifically target any cancer that was in the bloodstream.

Hope others are able to chime in too for more specifics, but if you have any questions for me I'm happy to help.

REPLY
1 reply
miles5513 | @miles5513 | Apr 13, 2023

I have metastatic triple negative breast cancer. I am 77 yrs. old. What treatments did anyone who has this diagnosis receive? I would be grateful for any replies. bemar23

REPLY
2 replies
mdr3 | @mdr3 | Feb 27, 2023
In reply to @lnlowe70 "(I'm pretty sure you meant DEcrease, not increase...and I totally agree with your sentiment about doing..." + (show)
@lnlowe70

(I'm pretty sure you meant DEcrease, not increase...and I totally agree with your sentiment about doing anything, anywhere, anytime!) 🙂

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OOPS!! You're so right! I won't analyze the psych loose associations there. I wish everyone well with these decisions. Never hesitate to request a second opinion on anything!

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