Metastatic Breast Cancer treatment options

Posted by junec @junec, Oct 13, 2020

Hello all, Firstly thank you for creating this forum. Late August I was diagnosed with stage 4 MBC that has gone to @3 bones and through the skeletal system. Bone biopsy confirms BC in bones but PET shows the bones are not hypermetabolic where the breast & lymph are hypermetabolic. I'm in Raleigh NC. My surgical & medical oncologist have ruled out surgery, chemo & rad leaving me with one option, Ibrance with an inhibitor. I've read the trials ( 2016-17) on Ibrance and it seems like 79% of participants have lower immune responses. Firstly, Like to know if anyone has feedback on a newer protocol/drug regime as this seems to have been developed 3-4yrs ago. And anyone have personal experience with Ibrance if they could let me know what their day is like, quality of life. I understand everyone's different… I'm 68yrs, living alone and this decision weighs heavy on my shoulders. Thank you for your responses.

@mom23boys

I happened across your post from October and hope you are doing well. I've been on Ibrance with Letrozole since June 2019 and never had any side effects from the Ibrance (no nausea). I've only recently (Jan 2021) had my neutrophils drop to the bottom of the "average" range, not the range they need to be concerned with yet. I've also always been on 125 mg which they can lower if you do have side effects and I've heard it is just as effective. The letrozole (estrogen blocker) caused me thinning hair and some joint aches but the aches have gotten less as time has gone by.
Peggie

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Actually I posted today. I am still on 100 mg of IBrance. If they increase it to 125 mg, I'm not sure if I will have any worse side affects. So far I'm pleased that I'm doing pretty well. I'm glad you're doing ok. Breast cancer can be a rough ride at times!😟

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@mtt

Actually I posted today. I am still on 100 mg of IBrance. If they increase it to 125 mg, I'm not sure if I will have any worse side affects. So far I'm pleased that I'm doing pretty well. I'm glad you're doing ok. Breast cancer can be a rough ride at times!😟

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mtt, I'm glad you are doing well. My understanding is the lower dosage works as well. I asked my Onc to lower my dosage to 100 just to see if it would boost my blood counts to more normal levels, but he won't. He says he uses the highest tolerable dosage and since I have no side-effects from the Ibrance he prefers to stick with 125. I lead a fairly slow life-style (baby sit grandkids) stay-at-home mom of 1 last "at-home" son (17 and a senior in H.S.) ….I'm 59 and was an older mom. I hike and that's where the aches start up. Mainly from the bone mets in my upper femurs and lesions on my sacrum and ilium. I've had to shorten the hikes or I get pretty stiff, from babying the legs I think. All in all I can't complain as things could be worse.
Nice talking with you.
Peggie

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@mom23boys

mtt, I'm glad you are doing well. My understanding is the lower dosage works as well. I asked my Onc to lower my dosage to 100 just to see if it would boost my blood counts to more normal levels, but he won't. He says he uses the highest tolerable dosage and since I have no side-effects from the Ibrance he prefers to stick with 125. I lead a fairly slow life-style (baby sit grandkids) stay-at-home mom of 1 last "at-home" son (17 and a senior in H.S.) ….I'm 59 and was an older mom. I hike and that's where the aches start up. Mainly from the bone mets in my upper femurs and lesions on my sacrum and ilium. I've had to shorten the hikes or I get pretty stiff, from babying the legs I think. All in all I can't complain as things could be worse.
Nice talking with you.
Peggie

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@mtt, I'd like to add my welcome. Congrats on hiring a cleaning service. More time to focus on the things you love to do. Traveling is something I love to do too, but it has been curtailed for the time being. Be sure to adopt safety measure when traveling during COVID, especially if you blood counts are lower due to treatment.

@mom23boys, I remember when I first saw your username I thought "what 23 boys? Is she a hockey coach?" Took me a while to figure out that your a mom to three boys, right? I'm glad you're still able to hike, albeit shorter routes.

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@colleenyoung

@mtt, I'd like to add my welcome. Congrats on hiring a cleaning service. More time to focus on the things you love to do. Traveling is something I love to do too, but it has been curtailed for the time being. Be sure to adopt safety measure when traveling during COVID, especially if you blood counts are lower due to treatment.

@mom23boys, I remember when I first saw your username I thought "what 23 boys? Is she a hockey coach?" Took me a while to figure out that your a mom to three boys, right? I'm glad you're still able to hike, albeit shorter routes.

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Hi Colleen! Yes, I remember your response and I thought "yeah, I guess that could mean I'm a foster mom or coach". Glad to see you are still out here plugging along. I'm not around as much as I was after diagnosis (april 2019). It's nice to see familiar names and be able to chime in and maybe help some of the very new girls with their questions. I''m so fortunate to be doing good on the Ibrance, Letrozole, Xgeva combo as my first line of treatment. My youngest son will be graduating H.S. in May and is heading to College (a local one) with a full-tuition scholarship. That was one of my biggest concerns in the beginning; not being here to see him graduate. I'm also planning on jogging across the 60 year birthday line in September and breaking a sort of family curse. My mother died at 59 of lung cancer and my mother-in-law at 59 of breast cancer. 60 is important, but of course I plan on going much further.
You take care!!!! Peggie

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@colleenyoung

@mtt, I'd like to add my welcome. Congrats on hiring a cleaning service. More time to focus on the things you love to do. Traveling is something I love to do too, but it has been curtailed for the time being. Be sure to adopt safety measure when traveling during COVID, especially if you blood counts are lower due to treatment.

@mom23boys, I remember when I first saw your username I thought "what 23 boys? Is she a hockey coach?" Took me a while to figure out that your a mom to three boys, right? I'm glad you're still able to hike, albeit shorter routes.

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Thank you for the welcome and advice on traveling.I will take the same precautions as I do at home. Last year we cancelled our trip to Florida and NC because of Covid. In the end we might have to cancel again. But how many years are we going to let this disease keep us from doing what we want to do. I think it would be good to get some vitamin D too and I don't get enough (except for a supplement) living in WI!🙄

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