Struggling-cancer is back, switching to TDM1

Posted by hockeymom25 @hockeymom25, Jan 31 8:19pm

I have metastatic breast cancer, triple positive I made it over two years on Herceptin and was NEAD. My PET scan today showed there is a legion on my spine between my lungs. It can’t be removed so they are trying radiation. I am being switched to TDM1. Any feedback on this chemo and success stories.

@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.

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@elizm

@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.

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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.

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@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

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