Triple Negative Breast Cancer: What treatments are you having?

Great information. Thanks!!

Hello cmdw2600,
My bc was found during my 6 months mammogram. I finished chemo and had a simple mastectomy on July 17th. Starting 4 rounds of Keytruda on July 28. The pathology report showed all clear margins and I am truly grateful for the success of it all. The journey seems difficult sometimes but I choose to see the good in all things. Do not miss your mammogram appointments, early detection is the key to catching it before it’s spreads. Take care and I hope this helps.
💕💕💕

My BC was also detected by mammogram and I do not miss my follow ups, believe me!

I know of numerous people who have had great success with Keytruda and I sincerely wish the same for you.

Thank you for your post and best wishes, Cindy 💌

I've gotten approved to take Lynparza as maintenance med. I believe I'm starting on the lowest dosage 100mg 2/AM then 2/PM - 4 total daily pills. Wish me luck on minimal side effects. I just received the pills and am starting to read the literature before starting. I was advised to not ingest only a couple foods (grapefruits, Seville oranges (found in orange marmalade) and pomegranates. But was not told of any interaction with my existing meds or supplements.

I was diagnosed with triple negative (TNBC) last month and had a mastectomy a week ago. I haven't gotten the pathology report back yet about lymph nodes and margins and all of that. I will likely be doing chemo of some sort regardless because it is triple negative and therefore more likely to recur, even if everything looks okay now.

I've heard it implied that chemo for TNBC is particularly challenging because there isn't the specific target to aim at, as with the other types. I'm sure responses and medications differ but I'm interested in hearing from any who may have an opinion on this. Thanks.

My 1st time with TNBC, I had the red Devil and taxol for chemo. 2nd time I had Gemzar and Carboplatin. All of them had horrible side effects. Biopsy scheduled for 8/21 for a suspicious spot ( size of a parsnip seed- very tiny)🙏🏼

Hello everyone,
My first treatment was red devil and taxol. I did okay with it, a little numbness in my feet but I used a glutamine supplement which was amazingly effective. I was cancer free for 5 1/2 years. In February 2023, I was diagnosed with local reoccurrence Tnbc. Chemo first carboplatin, abraxine and Keytruda. This was a brutal regime for me but I made it through all treatments. Each person handles chemo differently. All I can say is take your anti nausea meds every 4 hours (I had two different meds). I’m happy today I had a mastectomy and my pathology report showed all clear margins. My onc plan is 4 more rounds of Keytruda and follow up in 6months. Hopes this helps!
Stay strong, stay positive.

What is "red devil"? Somehow I don't like the sound of it... Chemo hasn't been determined yet for me, if/what kind.

I also had TNBC. Chemo, then surgery (all clear, except some minimal lympho vascular invasion). The double mastectomy I had may be helpful to clearing the lympho vascular invasion. I then had another round of chemo (Taxol/carboplatin). I was also dealing with ATM gene. The new protocol is to test all TNBC for gene mutations. I too have the numbness in my toes and I wondered about the glutamine supplements. First I have heard about this. What brand and dose? Thank you!

I'm TNBC and BRCA2+ - dx Sept. 21 - I did neo adjunct chemo (chemo before surgery -- I also had a port implant -- best thing ever) this is sometimes done to shrink the size of the tumor. I started with "red devil" (Adriamycin/push & Cytoxan/drip) - I think its called that for a number of reasons - one is that is very strong and you also pee red after each treatment for a short while. Since its strong there are precautions the tech and you need to take for a day or so after each treatment. There is a three week wait between each treatment (there were only 4 treatments of this) and there were self injections I had to give myself after each treatment - that was tough the first time I had to do it; but I knew it was only a few times and it was more scary than painful. I was fortunate to have my treatments on a Thursday late afternoon and I had a light work day for Friday and then I rested Saturday and was good for work on Monday. I did have to do lab work about a week before each treatment to make sure my blood work was good enough for me to have the next treatment. I really upped my protein intake - really high protein shakes in the morning. I was extremely fortunate - I had minimal side effects from my chemo - I did have my head shaved because my long hair got matted and I couldn't take it any more. I'll say this chemo treatment worked extremely well, my lump shrunk 75% from its's original size.

After my rounds of "red devil" then I had weekly treatments (12) of Taxol (drip). There were meds I took the night before and morning of treatment. This actually made me constipated so I would do prune juice for a couple days. Again my treatments were late on Thursday, I work light on Friday, rest on Saturday and work again on Monday. After these were all done I did more scans and it was determined these treatments shrunk my lump by almost 85%. But because I'm TNBC and BRCA2+ surgery was recommended. I wanted someone that specialized in breast cancer surgery - I had already been informed that I should think about a bilateral since that would reduce recurrence. Once I wrapped my head around that I knew I didn't want more surgeries so I decided to go flat.

After having several meetings and getting Onco and surgeon on the same page with the surgery to be performed, I had my bilateral. My only afterthought would have been to take a picture in with me when talking with the surgeon so we agreed on the same definition as flat. I'm not as flat in spots as I'd like - I sometimes feel misshaped - it still sometimes bothers me - not that I'm flat; but more that I had a different expectation that the final result.

After surgery a few cells were discovered in the lymph node dissection so radiation (15 treatments of 3D photon beam radiation with 267 centigray for a total of 40.05 gray) was then recommended. That was a piece of cake - the hardest part was keeping my arms stretched above my head for the treatment after the bilateral. As of March this year I was told I'm in remission - all treatments were completed and NED (no evidence of disease).

Know that each treatment I took was recommended - I researched; discussed side effects and impact to my recurrence rate - that was my main concern; before I agreed to each treatment. I needed that control and understanding - I didn't want to follow treatment blindly. I wanted to do everything to minimize it potentially recurring. After all my treatments were completed I had lowered by potential recurrence rate to 5%. Does that mean it won't return -- absolutely not - but I have done what I could to minimize it possibly returning. My last step will be to take a maintenance med (Lynparza) for about a year (this was FDA approved within the last couple years for breast cancer for BRCA+ survivors). I just recently got the medicine and am reading what my potential side effects are before I start.

For me - I felt my attitude toward my diagnosis was a huge factor in how I handled each treatment and possible side effects. Knowing what were possible side effects helped me plan how to handle those before they occurred - if they did. I know that each treatment I took could have long-term potential side effects; but at my age (70) many of them appear way down the road - I can live with that so long as I have quality time now with my family.

We each handle our diagnosis differently - I was fortunate to have a caring spouse; family that called to check on me (we don't live close to each other); I also had a cancer nurse advocate to speak with regularly and a medical support team that was patient and responsive to my many questions. I came to every appointment with a notebook with my questions - even if they were previously asked; just to make sure nothing had changed to change the plan we discussed.

Be kind to yourself. Decide how you want to handle decisions - they are your decisions. Make sure you're comfortable with your medical team. If they explain something and you still don't understand let them know you still don't understand. Don't be afraid to get second opinions to either confirm information or because you're not comfortable with a treatment recommendation.

This group can give you their experience - good and bad - but know it was their experience and yours may be different. This group will support you as best they can - post to vent even if that's all you need is someone to acknowledge how you feel.

I apologize for being long winded - thank you for listening and I hope this was helpful or at least informative.