Living with Triple Negative Breast Cancer: Seeking Support and Experiences

HiI Pam.. I can't offer advice but I sure can offer support. I also was diagnosed with with TNBC Stage 3 on February 15th. I met with the oncologist Tuesday and I am supposed to start chemotherapy next week. I will be doing chemotherapy once weekly for 12 weeks, then once every 3 weeks for 4 months. Then immunotherapy during chemo and for a year after. The oncologist said the chemo for TNBC is pretty bad with nausea, constipation, neuropathy and other side effects that about 15% of the people stop treatment. She said to do exercises that get the blood flowing to your arms and legs to help with the neuropathy. I hope some of this helps!! Hugs & Prayers from Oregon!

Thank you Heidi. Did you have any type of surgery at all? Lumpectomy or Mastectomy ?

Not yet. They needed to get me into chemotherapy ASAP since my TNBC had already spread to multiple lymph nodes. They said they needed to stop it from growing and spreading before any surgeries. If I do get any type of surgeries, it will be after all the chemo to do "clean up"

Hi Pam, I’m so sorry about your diagnosis. I’m not Triple Negative, I’m Triple Positive, But Stage 3B IDC and recently finished 6 rounds of TCHP chemotherapy, and am scheduled for my mastectomy surgery on Monday, which will also include all of my auxiliary lymph nodes on that side unfortunately as the cancer has spread to all of them as well as the skin so that will have to be removed as well. I will then start radiation therapy after. Chemo is different for everyone, some tolerate it better than others, but it can be a difficult time, however I tried to focus on the positive aspect, that it was killing my cancer. The Breast MRI post-chemo showed that my very large tumor had reduced to about half its size before chemo. So while I was hoping for it to entirely disappear from chemo, it’s still good progress that it had significantly shrunk so much, and now my surgeon can operate to remove it. This journey is a difficult one, so make sure you have a support system (groups like this of other patients and survivors are very helpful) in place to be able to go to for encouragement, questions, or just to vent when you need to to people that “get it”. Wishing you all the best in your treatment, and happy to answer questions if I can or just be hear to listen if you need it.

Thank you...

"Hi Pam, the effects of medication can vary greatly depending on the type and dosage. Everyone's body is different, so it's hard to predict how you'll feel. Personally, I didn't experience any immediate sensations after chemotherapy, but side effects can differ significantly from person to person."

Thank you Elsie

Have a good friend who survived Triple3Negative breast cancer. She had a lumpectomy, chemo & a lot of radiation, 21 times. Clear of cancer going on 4 yrs.

Is your MRI with contrast dye?

Yes it was. Since my genetic test came back with no other cancer genes, I went with lumpectomy. They put the clip in today and just prior to my surgery they will do a nuclear medicine injection in my nipple then off to surgery. Surgery is Tuesday. I’m guessing I will be treated with radiation and hormone therapy. I’m nervous about the side effects of those. Ugh

So, updates on chemo side effects so far for me (I've only had 2 sessions).. 4 days after my 2nd day of chemo I broke out in hives or rash that covered 90% of my body. I found that nothing helped with the itching except Allegra Hives over the counter medicine. I also lost almost all my hair on Saturday. It went really quickly in the shower. I personally haven't had nausea much or aches and pains yet. I'm on Carbo/Taxel chemo weekly for 12 weeks the another round of medications every 3 weeks for 4 months. It turns out I'm BRCA1 positive, so also have a double mastectomy and hysterectomy when chemo is all done.

Your feelings about this diagnosis are completely understandable, and reaching out to this community shows real strength. Many members here have navigated similar paths with triple negative breast cancer and can share their experiences with treatment timelines and managing side effects. The community is here to support you through each step of this journey, so don't hesitate to ask questions as they come up.