1. < Breast Cancer

Metastatic breast cancer: Anyone else?

Posted by rae3 @rae3, Oct 6, 2016

Hello...I am new to this site. I had BC originally in 1989 with lumpectomy, chemo and radiation. After 4 months of pains, thought to be muscular from lots of tennis, xrays revealed cracked vertebraes in the spine and led to MBC diagnosis, to the bones. I have been receiving xgeva and faslodex injections once a month since February 2015. One round of radiation in August to the hip eliminated that pain by reducing the tumor. Just wondering if there is anyone out there in a similar situation and how are you doing??

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | May 27, 2018
In reply to @djankord1 "I was diagnosed with two different cancers in my left breast in April of 2013. I..." + (show)
@djankord1

I was diagnosed with two different cancers in my left breast in April of 2013. I felt the cancer in my nipple and knew something was wrong. I decided to have bilateral mastectomies on July 15, 2013. The 4th day, my husband took me home and within a half hour had left to go golfing. I couldn't even open a pill bottle! I should not have been surprised because he was never there when I was sick. I got lucky and didn't have to have chemo or radiation. I didn't think I would ever set foot in the Cancer Institute again. Low and behold, just 3-1/2 years later my back pain got so bad that I went to Urgent Care and from there to another doctor because they didn't know what was wrong. I found out my back is pretty much full of cancer, the clavicle, ribs spine, pelvis and some in my femur. I wish someone would have told me to watch for back pain!! So that was February of this year. I have had two rounds of radiation and was hospitalized for 3 days in May to try to get my pain under control. This was the most horrendous pain I have ever had! I was almost screaming and sobbing at the same time. I hated that my son and Mom and Dad had to see me like that. After radiation, my pain was gone for 2 months. It came back and has steadily increased, even though my CT was good in October. It seems that my morphine and Flexeril aren't doing anything for my pain now. I have been very depressed today. I go through this about every 3 weeks. I feel like I have nothing to live for. The world goes on around me and I sit in my apartment. I have heard many times, but what about your kids? I have the best kids in the world and they will live without me. I just don't want to end up like a few friends who laid in bed dying while their family watched in terrible pain.

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Hi Trish @trishj
Your comment was posted perfectly. Here are detailed instructions about posting a message and more: https://connect.mayoclinic.org/get-started-on-connect/

Let me know if I can help further.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 27, 2018

Hi @mertdog2000, welcome to Connect. There are pros and cons to travelling for treatment. You'll want to consider availability of treatment options as well as your mom's overall health status and age. You might consider calling larger cancer centers such as Fred Hutchinson in Seattle or Mayo Clinic in Rochester, share your mother's medical history and find out if they can offer options different from what your mother currently has had.

Here is the contact information for Mayo Clinic mayocl.in/1mtmR63. The cancer team will review her medical history. It is our goal to provide the best care each patient needs, however we do not want to have you incur additional costs for evaluation or travel if we do not feel we can offer care that is different from what you’re already receiving.

Sounds like @wandering may have a good recommendation of an oncologist for you in Helena closer to home.

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mertdog2000 | @mertdog2000 | May 28, 2018

Thank you so very much for your information

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mertdog2000 | @mertdog2000 | Jun 2, 2018
In reply to @wandering "Don't know where to start with this reply. I have Stage IV metastatic breast cancer. I..." + (show)
@wandering

Don't know where to start with this reply. I have Stage IV metastatic breast cancer. I too live in a small town in Montana and have a great oncologist in Helena. Don't want to go into detail, but I was a "snowbird" patient at Mayo Clinic in Scottsdale. My experience there was not good. We are now year around residents in Montana partly because of the Mayo experience.

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Thank you for writing I have also heard that kalispell has a great oncologist too will find out name and let you
Know blessings to you

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nicole66 | @nicole66 | Jun 16, 2018

My mother is in stage 4 breast cancer and takes chemo but not radiation. How important is it to have radiation?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 16, 2018
In reply to @nicole66 "My mother is in stage 4 breast cancer and takes chemo but not radiation. How important..." + (show)
@nicole66

My mother is in stage 4 breast cancer and takes chemo but not radiation. How important is it to have radiation?

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Hi @nicole66, welcome to Connect.
You'll notice that I moved your message to this existing discussion about stage 4 breast cancer. I did this so you could meet others talking about metastatic breast cancer and treatments, like @wandering @mertdog2000 @elvandi @djankord1 and others.

Nicole, there are many factors that your mom's cancer team will consider when recommending treatments for breast cancer, like the tumor type, stage, size, age and previous treatments received. No two people are alike. It is possible that radiation is not appropriate at this time or that palliative radiation may be offered later if the tumor grows.

Can you tell us a bit more, if you're comfortable? Is this your mom's first diagnosis or a recurrence? Are you her main caregiver?

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saltis | @saltis | Jun 16, 2018

HI dear @rae3 & @nicole66
Welcome to the group. I don't know where to start but cancer patients are far more surviving their cancer than before. There are so many new treatments and medicines that they are mindblowing. I just wish you all good luck and lots of positive energi. Here in Sweden we read about that nowadays 70% of cancer patient survive their cancer thanks to new treatments and medication. I am one of the lucky ones who has survived my breast cancer for the last 23 years & changed both treatments & medications many many times. Falsodex together with chemo helped me almost a year but suddenley it was time to change and this time must change chemo treatment again.
Just remember that life is wonderful specially when you have your beloved ones with you and they show their happiness in having you around. Nicole please let your mother know how much you and the rest of family loves her. She must be really afraid of every shadow now. She needs reassurances that she is needed and that her family stands by her and need her. Have patience and get help from your community to help her better. Don't let her imagine for one moment that she is consuming your time and energy.
Dear Rae, wish you all the best and goodluck. You are going to have your hair grown again. Take care of yourself and sorry I don't know about the possible solutions to your problem. But remember your life is precious, every day, hour, Enjoy it as best you can, cry but have fun, too.

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nancy2952 | @nancy2952 | Jun 25, 2018

I was recently diagnosed with MBC in my bones. My doctor has me on Ibrance and letrozole and Xgeva injections. Has anyone else tried this treatment plan?

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4 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 2018
In reply to @nancy2952 "I was recently diagnosed with MBC in my bones. My doctor has me on Ibrance and..." + (show)
@nancy2952

I was recently diagnosed with MBC in my bones. My doctor has me on Ibrance and letrozole and Xgeva injections. Has anyone else tried this treatment plan?

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Hi @nancy2952, welcome to Connect. I'm tagging fellow members @karenatmayo @sistie @rae3 @194719731977 and @wandering, who have had one or more of the 3 drugs you are taking: Ibrance and letrozole and Xgeva.

Nancy, how long have you been on this regimen? How are you feeling?

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nancy2952 | @nancy2952 | Jun 25, 2018

I have been on the Ibrance and letrozole for two weeks. I will be getting the first Xgeva shot Wednesday. So far I feel fine and have had no side effects.

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