Metastatic breast cancer: Anyone else?

I also had a lumpectomy in 1989, followed by six weeks of radiation. Then in 2000, I had a mastectomy, followed by six months of chemo. I continued to go to my oncologist for follow-up visits every 3 months, then every 6 months, and then once a year. In December 2011, a blood test taken at one of these follow-up visits showed that my tumor markers had elevated, but that alone is not enough to say whether or not a tumor is present. So my onc had me do two more blood test (one a month later, and one two months later), and the TM continued to elevate. So she had me get a bone scan, a PET/CT scan, and a biopsy. After all of this, I was diagnosed with mbc, with mets to my sternum and one right rib, and started on the same treatment you are on in July 2012. It has been almost 5 years now since I've been on Xgeva and Faslodex. No one would ever know that I'm being treated for metastatic bc unless I tell them because the treatments have not interfered with my daily activities. I wish you well as you continue your treatment.

I'm not taking any pain meds - two Advil a day and not sure I need them. I really feel quite well. I have lots of stress in my life right now not directly related to the MBC. My 96 year old mother needs to move first of April so I'll be heading out to help with that. The good news is I have rented an AirBnB place most of the time I'm gone so I can have a little down time while there. We are in Arizona til May. I chose a new oncologist this winter and am happy with him so far. My deal with my oncologist in Montana (summer place) is I will not change anything unless he approves. My new Arizona oncologist is OK with that so that's our deal. My tumor marker is heading the right direction so I doubt we will change anything unless that goes up. I was on Oxy at first (while in the hospital and for about two months). Didn't like how they made me feel and I could not drink wine while taking them so I got off of them. My oncologist told me it would only take a couple days to find out if that was a good move which it was. Best wishes - stay positive and spend your time with positive people not people who relate negative stories about people they know who had cancer and died - ugh.

Wandering...wondering if you got to Arizona this season???? How are you doing?? I have been on a timed release oxycontin 20 mg. for pain. Are you taking any pain meds???? My latest annual mammo in February indicated new calcifications in the original breast and recommended a biopsy or follow-up mammo in 3 months. My onc recommended waiting the 3 months. Not sure what that will mean.

Thank you for your message. I live in Stockholm- Sweden & eventhough calling USA is absolut no problem, but I receive all my treatments & medication here. I just wanted to know and learn of other patients experiences & reaction. Thanks again.

I was rereading some posts and came acros this one from you. I contacted the Metastatic Breast Cancer Association in New York when I was looking for a new oncologist in Arizona. They got me in contact with several women in my area who were very helpful. You might give them a call and let them know where you are and that you are looking to find others with MBC. They are an all volunteer organization so you will probably need to leave a voicemail but they are very good about returning calls.

Happy birthday, Colleen. We will celebrate by going out to dinner - hope you have fun too!!

I am getting a faslodex injection monthly (since June 2016) and xgeva every three months. I do not dye my hair and never have. It's somewhat gray and brown. I am outside Phoenix so if you are in my area let me know. Not many of us have mets but would like to connect with others who do to share information. PS: My tumor markers have gone down with the faslodex (or maybe for some other reason) - this month at 71.1, which is down 25 since last month. I am hopeful, based on this, that I may survive a bit longer.

Hi Colleen…I had a fine holiday as my 2 sisters live nearby and although our kids  visited this Fall, we had nieces and nephews visiting this month.I am receiving xgeva and Faslodex hormone injections once a month…two years now.   Wondering if anyone else on this regimen dyes their hair.     I used to color mine blond but my oncologist said probably not a good idea…although he really didn’t know for sure how doing so would affect my hair.   Anyone out there with that experience???

As I get older, I just want my birthday to fade into the woodwork. It is pretty easy to do when everyone else is focused on their celebrations. Dear husband is planning on cooking dinner on my birthday at home. New Year's Eve seems like a great day for a birthday. As you said, EVERYONE is celebrating your birthday - by choice or not. I'll think about you next Saturday. Red wine anyone?

Good to hear from you Wandering. I can see how it would be hard to find a place to celebrate a birthday on Christmas Day. I have the opposite. I was born New Year's Eve - so everyone celebrates my birthday, but they just don't always realize it 😉

I hope both you and your husband are done with the flu before your birthday. Chag Sameach!