MBC What did you experience when 1st line treatment stopped working?

Posted by jbp @jbp, Feb 26, 2023

My 1st line of treatment for MBC has been monthly faslodex injections, 150 MG Verzenio twice a day, and Zometa infusions every 3 months. My bone and liver lessons have been stable for 11 months. My CA 15-3 marker has gone up from 70 to 150 and I have been having some pain in my hip for the past few weeks. My restaging appointment is next week. At this point I am curious to hear from individuals who have moved to 2nd and 3rd lines of treatment. My cancer is ER+ and HER2-.

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@jbp, this is a good question. I'm tagging fellow MBC-ers who may have experience with moving to second and even third line treatment options like @oilermama @mom23boys @djwc @elizm @pbnew @ja5747 @ta8 @shirleyjmb @adanab @rinar001 @cynthia09 @leeann66 and more.

You may also be interested in the posts in this related discussion:
- Metastatic Breast Cancer treatment options https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-treatment-options/

@jbp, you ask "what did you experience" and refer to the side effects and tumor markers. I'm also wondering how are you managing emotionally? How are you preparing for your appointments next week for re-staging and next steps?

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@colleenyoung

@jbp, this is a good question. I'm tagging fellow MBC-ers who may have experience with moving to second and even third line treatment options like @oilermama @mom23boys @djwc @elizm @pbnew @ja5747 @ta8 @shirleyjmb @adanab @rinar001 @cynthia09 @leeann66 and more.

You may also be interested in the posts in this related discussion:
- Metastatic Breast Cancer treatment options https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-treatment-options/

@jbp, you ask "what did you experience" and refer to the side effects and tumor markers. I'm also wondering how are you managing emotionally? How are you preparing for your appointments next week for re-staging and next steps?

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I was diagnosed with stage 1 IDC in 2016. Then metastatic breast cancer to bones end of 2020. I was on letrozole for 4 years. Now, I take Ibrance, Fulvestant and Zometa.
As far as emotions, it's up and down like a roller coaster. Sometimes I have meltdowns. Other days, I seem to be at peace. I still allow small things that really don't matter, get me upset.
I'd be glad to talk to you more if you'd like. Just let me know.

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Hi jbp. Hope you're doing good today. Restaging appts. can be stressful as they approach. Always wondering if there is progression. I was diagnosed in April 2019 denovo (stage 4 right away, never an early-stage). I was started on Ibrance, Letrozole and Xgeva. All similar meds to yours (a CDK4/6 inhibitor, estrogen blocker and bone strengthener). I had mets to lungs, femur, humerus and skin at the time. After 3 years I had another met show up in my lung pleura so they switched me off letrozole and on to Faslodex shots. I'm at another 10 months now and stable. Your markers going up could mean something but alone are not acted upon. The scan will tell if there was spread. It's possible the hip pain could be a spot in the hip/femur area. I put up with increasing achiness in my femur until it started to actually affect my walking. They then radiated it and now I'm much better and my tumor markers started to come down also. It's so hard to predict what may OR MAY NOT be going on. Just know there are many more treatments for our subtype E+/Her2-neg of cancer. If I can answer any more questions let me know.
Peggie

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Thank you Peggy. It's just really nice to hear from someone who is dealing with the same issues. The fact that your treatments have been keeping your cancer "stable" since 2019 is very encouraging to me. Tomorrow is my scan day....so I'll find out what is going on. Hoping the Verzenio/Faslodex is still working🤞

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@colleenyoung

@jbp, this is a good question. I'm tagging fellow MBC-ers who may have experience with moving to second and even third line treatment options like @oilermama @mom23boys @djwc @elizm @pbnew @ja5747 @ta8 @shirleyjmb @adanab @rinar001 @cynthia09 @leeann66 and more.

You may also be interested in the posts in this related discussion:
- Metastatic Breast Cancer treatment options https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-treatment-options/

@jbp, you ask "what did you experience" and refer to the side effects and tumor markers. I'm also wondering how are you managing emotionally? How are you preparing for your appointments next week for re-staging and next steps?

Jump to this post

Emotionally I have been all over the place. I recently started seeing a counselor who works for the Cleveland Clinic oncology department and have found that helpful. I have trouble talking about it with my family because it just makes me cry, so it is a relief to get it out with someone who I'm not upsetting. I've also heard from some individuals who have been in treatment for stage 4 for several years and that is helpful, Tomorrow is my appointment so at this point I'm just hoping for the best

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@shirleyjmb

I was diagnosed with stage 1 IDC in 2016. Then metastatic breast cancer to bones end of 2020. I was on letrozole for 4 years. Now, I take Ibrance, Fulvestant and Zometa.
As far as emotions, it's up and down like a roller coaster. Sometimes I have meltdowns. Other days, I seem to be at peace. I still allow small things that really don't matter, get me upset.
I'd be glad to talk to you more if you'd like. Just let me know.

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Thanks. I basically feel very healthy at this point and am able to do my normal activities except when interrupted by appointments related to my cancer. This week I am traveling from Florida to Rochester for my restaging. I have a hard time reconciling how I feel physically, with the prognosis for people with stage 4 cancer. I'm grateful that I am tolerating my treatment so well, but fearful of what comes next, Living in the moment is easier said than done. It is helpful to know there are others who are benefitting from a similar treatment plan and hanging in there.

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@shirleyjmb

I was diagnosed with stage 1 IDC in 2016. Then metastatic breast cancer to bones end of 2020. I was on letrozole for 4 years. Now, I take Ibrance, Fulvestant and Zometa.
As far as emotions, it's up and down like a roller coaster. Sometimes I have meltdowns. Other days, I seem to be at peace. I still allow small things that really don't matter, get me upset.
I'd be glad to talk to you more if you'd like. Just let me know.

Jump to this post

I have MBC. Started Doxitaxol for 2 months and no response. Extremely low white blood count. Then went with
with faslodex , Ibrance, and xgeva for 3 months and it started progressing again. Have been on Xeloda for 9 months. Now it has stopped working. I am hoping to start Enhertu . I am 79. Any feedback from Mayo. This sounds like my.last resort and I feel devastated

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Has anyone asked about immunotherapy for our type is cancer. There is an interesting article on the national cancer Institute web site. It is probably something not available yet for first line meds but it sounds promising.

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@ejl

I have MBC. Started Doxitaxol for 2 months and no response. Extremely low white blood count. Then went with
with faslodex , Ibrance, and xgeva for 3 months and it started progressing again. Have been on Xeloda for 9 months. Now it has stopped working. I am hoping to start Enhertu . I am 79. Any feedback from Mayo. This sounds like my.last resort and I feel devastated

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Wow...I really hope they can come up with something to help you...not knowing what's next is tough and sounds like you have been through so much already. Everybody has a different story, thanks for sharing yours.

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@ejl

I have MBC. Started Doxitaxol for 2 months and no response. Extremely low white blood count. Then went with
with faslodex , Ibrance, and xgeva for 3 months and it started progressing again. Have been on Xeloda for 9 months. Now it has stopped working. I am hoping to start Enhertu . I am 79. Any feedback from Mayo. This sounds like my.last resort and I feel devastated

Jump to this post

I know it seems like it's all over, but it's not. Actually, was 3 months long enough to really judge the Ibrance and Fulvestant?
From what I hear, new medications are coming out. You don't have an expiration date on your forehead. None of us know what lies ahead. Cancer is so scary. It's always in our minds. Please don't lose hope. God may have something big planned for you.
I wrote a small book about Cancer. I would like to send it to you. I don't know if we can private message on this site. If you know how we can exchange information, please let me know.

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