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MBC How long do the adjunct therapies work for?
DarleneH
5 Posts
I am new to this forum but want to thank everyone for their input.

I had Her2 BC diagnosis stage 2b in October 2018 and went through chemo, a lumpectomy and radiation. After treatment my oncologist told me to go on wth my life that I was cancer free and the success percentage on treatment was 85%.

in the follow year , I worked hard to get healthy and worked out 4 times per week. I had back pain and went to an osteopath, I had leg pain ( from working out too hard?) and in 2020 when I had sciatic pain my GP sent me for a bone scan and they found extensive bone cancer and two small spots on my lungs.

More chemo and radiation to my spine and the lung spots are gone and the bone scans show the bone cancer is not progressing.

I am on Herceptin and Pertuzamab every 3 weeks and Denosumab 1 per month. My oncologist will only say that we will continue these until they stop working but what does that mean? The median survival rate ( yes … my Internet studies) say 48 months.

I feel like a ticking time bomb, never knowing when this will turn south. Has anyone been on these types of treatments and had positive effects?
9 Replies
Runner Girl
1688 Posts
Welcome DarleneH

I am sorry for what brings you here. I am curious about your cancer and treatment as it is similar to mine.

I was diagnosed in May 2018 with IDC, ER+ and HER2+. I had a lumpectomy, chemo, radiation, herceptin, tamoxifen and am now on anastrozole (an aromatase inhibitor). I'm wondering, did you receive Herceptin? Were you given any estrogen blockers? Were you ER+? I was recently advised by my oncologist that I will be on the estrogen blocker until December 2023 - but what happens after that when the estrogen can again be free.

I have seen there are good results with the treatment you are receiving now. You could look at what is being researched at MD Anderson in Texas - they have some significant clinical trials going on for HER2+ cancers. Please don't pay attention to the survival rates - typically based on old stats, treatment is so much better now. Plus each person highly figures into their survival with attitude, their health otherwise, etc.

Runner Girl
DarleneH
5 Posts
Thanks for your reply Runner Girl‍ . I was ER- and did get Herceptin for 12 months after my first round of treatment. I asked the same question for Herceptin… what happens when they stop the Herceptin after 12 months… will the cancer come back? And it did. My oncologist said it was probably a rogue cell that the treatment didn’t get and it multiplied. I guess I will never know.

thank you for the suggestion on MD Anderson trials, I’ll take a look .
DarleneH
5 Posts
Thank you so much Runner Girl‍ ! I will read through all 3
S2020
256 Posts
Hi DarleneH‍,

I am sorry to read about your recurrence and stage. I am glad to read your lung spots are gone and the metastatic cancer to the bones is not progressing.

As Runner Girl‍ posted, there are good results with the treatments you are receiving. (Thank you, Runner Girl, for the links.)

The infusions I am receiving include Herceptin and Perjeta, too. Regarding your comment about the oncologist saying you would continue receiving them until they stop working and “what does that mean?”, I will respond as it was explained to me:

I was told that I will also receive treatments for as long as they are working. The medical oncologist said a lot of patients continue for many years on HER2 treatments for metastatic HER2 breast cancer and it is treated like a chronic disease. if scans indicate that treatments are no longer working and there is progression, then other treatment options may be considered. For example, Kadcyla is another HER2 treatment we discussed. There are other treatment options that may be considered.

I met a woman who is being treated for metastatic HER2 breast cancer to her lungs. Because of her age, she did not have chemo, surgery or radiation. She has been receiving Herceptin infusions for almost nine years and has a good quality of life with her children and grandchildren. Also, I met another woman who has been receiving Herceptin for seven years for metastatic HER2 breast cancer to the spine and she is very active with a good quality of life, too. (The use of Perjeta in Canada is newer.)

An oncologist in the U.S. is seeing more metastatic HER2 patients with no evidence of disease for many years, thanks to Herceptin, and has started to question at what point are they considered cured. That used to be unheard of for metastatic breast cancer of any type. Oncologists usually refer to metastatic cancer as treatable, but not curable. Yes, it is still considered an aggressive breast cancer, but these treatments are reason to hope.

When are your next scans to check how everything is going? Mine are on June 25. Wishing you (and me) the best possible outcomes.

In addition to this website, online groups at Wellspring may also be helpful:

https://wellspring.ca/online-programs/programs/all-programs/
DarleneH
5 Posts
Thank you S2020, you have given me some hope. I just had a CT scan this week and will get the results on Wednesday. My next bone scan won’t be until September.

I’ll read through the link you sent.

hearing the others have beat the 48 month survival median is encouraging!
Mammabear
148 Posts
I am stage 4 her2+ . Have been on herceptin and pertuzumab for almost 2 years. Stable is considered working. As others have said, there are women on this protocol for 10+ years.
next drug is TDM1 if anything starts growing and they see progression of the disease.
It is hard living your life with treatment every 3 weeks. You have to plan around them. They get moved. You have regular scans and every ache is progression.
but living is the plan and outcomes for her2+ stage 4 are better than ever.
Here is a link to my story. I hope it helps you in living your plan with advanced cancer
https://youtu.be/n4FYIZ2x2bs
Runner Girl
1688 Posts
Mammabear

Thank you for sharing your story.

You are an inspiration and your story will give hope to so many. Including me, should my cancer decide a 2.0 is warranted. I'm at 3 years, so far so good.

Runner Girl
DarleneH
5 Posts
Thank you for sharing Mammabear‍ , I loved your video! You’re right, we need to think of this as 2.0. I too continued to work throughout my treatments this time as a grabbed onto anything that would normalize this. I have decided to retire in August so we will see where this 2.0 of my journey takes me.
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