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.

@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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Sorry about that. It's Avalon Organics therapy thickening shampoo. Contains biotin and b complex. I ordered it off the internet. Much cheaper than buying at a health food store. You have to be patient - it takes at least 3 months to see results - depends on how fast your hair grows.

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Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

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Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor's appointment January 4 so every month I get stressed waiting on my "numbers" (CA27-29 - tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day - ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny's which I cannot do - not trashing Denny's but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

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@wandering

Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor's appointment January 4 so every month I get stressed waiting on my "numbers" (CA27-29 - tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day - ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny's which I cannot do - not trashing Denny's but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

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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!

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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?

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@colleenyoung

Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

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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???

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@colleenyoung

Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

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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.

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@wandering

Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor's appointment January 4 so every month I get stressed waiting on my "numbers" (CA27-29 - tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day - ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny's which I cannot do - not trashing Denny's but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

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

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@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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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.

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@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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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.

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