Share this:
rae3
@rae3

Posts: 13
Joined: Oct 06, 2016

Metastatic breast cancer: Anyone else?

Posted by @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??

REPLY

@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.

@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

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

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

@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.

Jump to this post

how do I get my comments posted?

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.

@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.

Jump to this post

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.

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.

Thank you so very much for your information

@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.

Jump to this post

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

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

@nicole66

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

Jump to this post

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?

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.

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?

@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?

Jump to this post

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?

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.

Please login or register to post a reply.