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.

mertdog2000 | @mertdog2000 | May 28, 2018

Thank you so very much for your information

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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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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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wandering | @wandering | May 27, 2018

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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1 reply
trishj | @trishj | 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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how do I get my comments posted?

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mertdog2000 | @mertdog2000 | May 26, 2018

My mom had breast cancer in 1981 was cancer free until 2011 now is on her lungs bones and liver they are doing a liver biopsy next week we live in a smaller town in Montana does anyone think it wise to go to the Mayo Clinic for treatment? She did hormone treatments then when they quit working chemo and now the chemo has quit working they placed her on a pill but that doesn’t seem to be working eother

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194719731977 | @194719731977 | Mar 15, 2018
In reply to @colleenyoung "Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and..." + (show)
@colleenyoung

Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must've been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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The only side effects I have are sore at injection site and sore heel of my left foot.

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194719731977 | @194719731977 | Mar 8, 2018
In reply to @colleenyoung "Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and..." + (show)
@colleenyoung

Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must've been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

Jump to this post

Yes I am taking both shots. They make me very tired and at night I have pains in my heels.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 2018
In reply to @colleenyoung "Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and..." + (show)
@colleenyoung

Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must've been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

Jump to this post

@194719731977, are you taking both Xgeva (denosumab) and Faslodex (fulvestrant) now? What side effects do you have to deal with?

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194719731977 | @194719731977 | Mar 7, 2018
In reply to @colleenyoung "Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and..." + (show)
@colleenyoung

Welcome @rae3. I'm glad you found us. I'm tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must've been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

Jump to this post

I have been taking Egeva for several years. The doc put me on Fulvestrant six months ago. Thanks

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