Triple Negative Breast Cancer: What treatments are you having?

Question, my oncologist said I would have 6 to 8 weeks of infusion and then evaluate should I advocate for a port(I think that’s what it called) or just go with the regular IV ?
Or will my infusion team be the lead on that?

@lynnj3 - I think I was told to try to have between 50-75% of my body weight in protein a day - so I started each morning with a very high protein shake. I'd use a high protein milk (Fairlife) with plain greek yogurt, I'd add a protein powder to the drink and frozen banana, or berries and would get probably close to 30-45 grams of protein in that meal alone - so the rest of the day I just tried to eat other things that were also high in protein. I did keep on hand high protein snack bars. My numbers stayed really good (except one weekend when we went away and my numbers weren't high enough for treatment); but otherwise I was able to do my treatments. I also researched vegetables and other foods that were high in protein. I did a fair amount of organic chicken, and quinoa (which I had never tried and found some pretty good recipes to do in the instant pot).

Honestly I did not even think to ask what what immunotherapy or or chemo regime I’ll be on , will for sure add it to my list of questions.
One thing i’m wondering now is what kinds of protein did anyone have on hand after the infusion? Protein bars? What are something that worked best ? How prepared should I be?

@lynnj3 things are moving quickly for you. Keep us posted! It is overwhelming but those I know who have gone through the immunotherapy and chemo found it doable in the end and I hope the same is true for you.

Welcome @lynnj3, I moved your post to this existing and active discussion:
- Triple Negative Breast Cancer: What treatments are you having? https://connect.mayoclinic.org/discussion/triple-negative-breast-cancer/

I did this so you can read previous posts and connect easily with other members with triple negative breast cancer (TNBC) like @thielmann1 @kk57 @olg1 @drummergirl @bpknitter53 @rahrah6263 @leolion811 @mkb4435 and more.

You've certainly come to the right place to un-pack that sense of overwhelm and prepare your questions for your upcoming appointment next week. What immunotherapy and chemotherapy regimens will you be starting? What questions do you have from others in the group who have been there?

What is TNBC stand for? It is not fun going through all of this I know! I have invasive lobular BC on one side. Thinking good thoughts for you.

Newly diagnosed TNBC I have seen the oncologist once and the discussion was overwhelming I’m not even sure what stage I have. I meet with him again August 6 and this group has been so helpful as to what questions I need to ask.
I will also have a PET scan on July 31 and start immo therapy and chemo on the 6th so glad I found this site

It is called red devil because of its color. It is very hard on the body and causes extreme nausea.

It was from a sports retailer, but any glutamine will work. I mixed one scoop with 8 ounces of apple juice. I hope this helps.

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.