Struggling-cancer is back, switching to TDM1

@hockeymom25
Dear Hockeymom25, as a HER2+++ patient myself, I can sincerely empathize with your predicament. The research community is just getting around to wondering if we're a novel (separate?) subtype of breast cancer. In addition, some of us are even resistant to or become resistant to Herceptin.

Did your oncologist say that this lesion was breast cancer? HER2+? or a second cancer, different from the first? or, because of its location, they are unable to do a biopsy on it?

As to MBC, research is making headway using T-DM1 and, to date, they have some encouraging news about it's use. Not knowing what treatments/procedures you had (lumpectomy? chemo? hormonal therapy?), other than two years of Herceptin, or the pathology of your new lesion, it's difficult to know where you may fit into it all.

However, you may be interested in reading the following:
https://www.cancer.gov/news-events/cancer-currents-blog/2019/kadcyla-fda-breast-her2-adjuvant
In the meantime, I wish you courage and success on this newest journey.

Thanks for sharing that article. I was on Taxol for 12 weeks and Perjeta with Herceptin. I had to stop the Perjeta due to extreme rashes/itching. I was also on Tamioxen but they are switching that because it must not be working. I actually had a double mastectomy last July due to very large breasts and back pain. They do believe it is still breast cancer and feel it is still triple positive but they are not able to operate to remove the tumor based on the spot that it’s in.

@hockeymom25
Interesting clinical trials going on with a new drug for HER2-positive mets called tucatinib. Here is one, for example: https://clinicaltrials.gov/ct2/show/NCT03975647

I mention this because I just got through watching/reading an interview with Matthew P. Goetz, MD, of the Mayo Clinic in Rochester, Minnesota, as he explains the findings and his excitement about this new treatment for brain mets coming out of the HER2CLIMB study. Note what he says in the last paragraph, however: "there is a study that will be embarked upon in which patients who have residual disease after standard chemotherapy receive either the drug T-DM1 or T-DM1 plus tucatinib. This study is actually in development, and we hope that bringing the drug in earlier actually will prevent not only recurrence systemically outside of the brain, but also in the brain as well." Might be something to explore.
https://www.medpagetoday.com/resource-centers/focus-chronic-lymphocytic-leukemia/cll-diagnostics-next-generation-sequencing-tp53/2730

Hello
I am on 7 of 14 rounds of T-DM1. I know this message was from 2020, but wanted to know how you did on the T-DM1 and was it successful for you (if you are still available on connect)
Wishing you always better days.
I am doing well on these treatments.

Round 7, halfway there❣️I see you around in the halls on connect, I am always happy when I see you, and you are always helping others, you rock! How are you feeling?

Doing well- I have a latimus flap surgery Thursday 9-29 hope this works to help with recovery.
I keep looking forward. Thanks for inquiring and thinking of me.

Hello, I am new to the community. I read you are half way through. I just started mine and would like to know did you experience any side effects? Also, what stage where you and what treatment did you resceived before TDM1?
Thank you

Hello, and welcome to connect, please allow me to tag @boathouse for you, she is an amazing survivor. You said you are just starting TDM1, does that mean you have had a treatment, or getting ready to start? I know this is a really frightening time and I am glad you are reaching out to this community. Almost all of us are BC survivors, some living with advanced cancer.
How are you feeling now? Can you tell me more about your cancer?

I'm tagging @hockeymom25 to make sure that she sees your questions.

@trinhttt, have you also been diagnosed with metastatic breast cancer? How are you doing?

They said I was Stage 1b but my cancer didn’t respond to treatment so they put me on kadcycla. I truly hope that my BC doesn’t spread but I am told that if you don’t get complete response your chance of cancer metastasizing is high.