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??

I was recently diagnosed with Invasive Ductal Carcinoma. I was wall set for surgery and then a PET scan revealed some metastasis on some bones (3 spots). All of this stated on June 5th. I am scared to death. I meet with my oncologist for the first time today, I believe I am beginning chemo today, but I am unsure. I am only 41 and I have a 4 and 3 year old. I have no idea what to expect, anyone been through this? Is it possible to over come this?

@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, Nancy. I am 69 and on the same drugs (iBrance, letrozole, Xgeva injections) as you are for a year now. (I also had whole brain radiation for MBC to the brain in addition to spine and pelvic.) The iBrance has made things "stable" for now so hoping for the best for now. I had Stage II breast cancer and all the treatment that goes with that 18 years ago and was fine until MBC diagnosis last year, which includes anemia, causing me to feel weak and tired much of the time.

@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 i have been on that exact mix since november 2017. For me totally doable. Lots aches, but stretching helps. I have insomnia too, but sleep meds also really help – either ambien or melatonin. I was diagnosed with BC june 2016, chemo, radiation, surgery. October 2017 saw it metastasized to my spine. Holding study since starting this mix of meds. I am 39 ueras old.

I have had metastatic breast cancer (MBC) for almost 5 years. I have not had chemo but am on medications to block the spread of the MBC to other parts of my body and/or organs. I have done really well on the MBC medications. (Very few side effects). There are lots of advances being made all the time. If you get placed on Ibrance and/or Faslodex, there is a great website with bloggers who have lots of experience with those drugs. (breasecancer.org) (I am currently on Ibrnce and Faslodex). I have been on Xgeva for 5 years which strengtens the bones. I am sure you are scared particularly with a young family but be assured you are not alone on this journey. Positive prayers and thoughts coming your way and lighting your path.

@nikki727

I was recently diagnosed with Invasive Ductal Carcinoma. I was wall set for surgery and then a PET scan revealed some metastasis on some bones (3 spots). All of this stated on June 5th. I am scared to death. I meet with my oncologist for the first time today, I believe I am beginning chemo today, but I am unsure. I am only 41 and I have a 4 and 3 year old. I have no idea what to expect, anyone been through this? Is it possible to over come this?

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Welcome to Connect, @nikki727
I can imagine that you are scared. There must be so many questions racing through your mind, especially with young children to think about. There are many women here ready to share their experiences with you, many of whom are living with metastatic breast cancer.

How did your appointment with the oncologist go? Did you start chemo? What kind?
Hope to hear from you.

@nikki727

I was recently diagnosed with Invasive Ductal Carcinoma. I was wall set for surgery and then a PET scan revealed some metastasis on some bones (3 spots). All of this stated on June 5th. I am scared to death. I meet with my oncologist for the first time today, I believe I am beginning chemo today, but I am unsure. I am only 41 and I have a 4 and 3 year old. I have no idea what to expect, anyone been through this? Is it possible to over come this?

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The meeting went well, considering the topic. I did not start chemo, I am getting some more lymph nodes biopsied near my trachea on Friday. If it is the same type of cancer I will start on treatment July 6th. The treatment will be a shot and a pill. Faslodex and Abemaciclib. I am meeting with a genetic counselor tomorrow for a genetic panel and then the Dr. mentioned giving me shots to start menopause. If that doesn't work, then we will discuss removing my ovaries. Right now I am just hoping it is the same kind of cancer. The odds are slim that it is a different type, but it can happen.

@wandering

I have had metastatic breast cancer (MBC) for almost 5 years. I have not had chemo but am on medications to block the spread of the MBC to other parts of my body and/or organs. I have done really well on the MBC medications. (Very few side effects). There are lots of advances being made all the time. If you get placed on Ibrance and/or Faslodex, there is a great website with bloggers who have lots of experience with those drugs. (breasecancer.org) (I am currently on Ibrnce and Faslodex). I have been on Xgeva for 5 years which strengtens the bones. I am sure you are scared particularly with a young family but be assured you are not alone on this journey. Positive prayers and thoughts coming your way and lighting your path.

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Thank you, as soon as I heard "Stage 4" I had myself pretty much gone already.

@wandering

I have had metastatic breast cancer (MBC) for almost 5 years. I have not had chemo but am on medications to block the spread of the MBC to other parts of my body and/or organs. I have done really well on the MBC medications. (Very few side effects). There are lots of advances being made all the time. If you get placed on Ibrance and/or Faslodex, there is a great website with bloggers who have lots of experience with those drugs. (breasecancer.org) (I am currently on Ibrnce and Faslodex). I have been on Xgeva for 5 years which strengtens the bones. I am sure you are scared particularly with a young family but be assured you are not alone on this journey. Positive prayers and thoughts coming your way and lighting your path.

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You are right. Stage IV is the top number. However, metastatic breast cancer is always designated as Stage IV. There have been so many advances. It is not considered "curable" but it is controllable. Stay positive – get a good up-to-date oncologist – and pay attention to what your body is telling you. Keep a close eye on how you feel and do not hesitate to call your oncologist about even issues you might think are minor. I am in a support group and we have ladies in the group who have survived cancer for many years (10 to 15 plus). I also think the survival rates you read on the internet are old and do not reflect the current rates so I do not put much importance in them. Actually the survival rate that's important is yours!! Keep your chin up, be positive and spend as much quality time as you can with friends and family. I do not spend time with negative people – don't need them in the clan. Sending positive thoughts and prayers your way.

@wandering

I have had metastatic breast cancer (MBC) for almost 5 years. I have not had chemo but am on medications to block the spread of the MBC to other parts of my body and/or organs. I have done really well on the MBC medications. (Very few side effects). There are lots of advances being made all the time. If you get placed on Ibrance and/or Faslodex, there is a great website with bloggers who have lots of experience with those drugs. (breasecancer.org) (I am currently on Ibrnce and Faslodex). I have been on Xgeva for 5 years which strengtens the bones. I am sure you are scared particularly with a young family but be assured you are not alone on this journey. Positive prayers and thoughts coming your way and lighting your path.

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Thank you so much, that is good to hear from someone else.

@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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I have only been on the Ibrance for 21 days. After the week off my blood work showed that my white cells were low. And my doctor told me to stop for a week. I have been feeling OK. Only side effect so far is my hair has been falling out.

In 2008 I was diagnosed with invasive dutcal carcinoma. I had a lumpectomy with 17 lymph nodes removed, 2 were cancerous. I underwent chemo therapy and then radiation. I was put on Tamoxifen and in 2011 my oncologist decided to put me on Letrozole. At that time I was experiencing some back pain so my oncologist decided to do a bone scan as well as a CT scan which showed activity in the medulium. I was immediately put on Letrozole and followed up with CT and bone scans every 6 months. The scans indicated “hot spots” / intense activity sometimes in various ribs and on the most recent in July with “moderate to intense uptake present within the manubrium which has increased in intensity and extent since the prior bone scan and corresponds to a lyric bone lesion within the manubrium.” Throughout these years I have not experienced any actual bone pain other than joint pain which is a side effect of the medication. A recent bone densitometry confirmed Osteoporosis. I discussed going off Letrozole with my Oncologist and she agreed with a 3 month redo of the CT and bone scans. This has really confused me as if it has metastasized into my bones why do I not have the pain? Has anyone else experienced this?

Hi @18dee,

You may notice that I moved your discussion and combined it with this existing discussion on metastatic breast cancer. I did this as I thought it might be beneficial for you to meet other members who are talking about this type of cancer.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I can imagine that you are worried. I'm tagging @wandering @rae3 @joancecilia2017 @tula @theda to get their thoughts. According to this information about bone metastasis, "Bone pain is often the first symptom of cancer that has spread to the bone. The pain may come and go at first. It tends to be worse at night and may get better with movement.
https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/finding-bone-metastases.html

@18dee, has your doctor prescribe any bone-building medications for the osteoporosis?

I was diagnosed with MBC bone mets in September 2013. I have been on Xgeva the whole time – started out once a month and now get shots every three months. I haven't had a bone scan in a while but my last one showed a great deal of improvement in the bone mets. I am now on Ibrance (cycle 4), Faslodex every 4 weeks and Xgeva every three months. My tumor markers have slowly been going up which is why my oncologist put me on the Ibrance. He wants to do a PET scan if the tumor markers continue to go up. I hear it takes a while for the Ibrance to take effect so I am not concerned. Taking a cruise to Alaska in two weeks so I can worry about the MBC stuff when I get back. Keep a positive attitude. There are so many great meds out there. I am on an Ibrance blog which has some very positive input and information from others. If you get on Ibrance you might google that and get on there. It is very specific to that and MBC. Very supportive. Best wishes.

@wandering

I was diagnosed with MBC bone mets in September 2013. I have been on Xgeva the whole time – started out once a month and now get shots every three months. I haven't had a bone scan in a while but my last one showed a great deal of improvement in the bone mets. I am now on Ibrance (cycle 4), Faslodex every 4 weeks and Xgeva every three months. My tumor markers have slowly been going up which is why my oncologist put me on the Ibrance. He wants to do a PET scan if the tumor markers continue to go up. I hear it takes a while for the Ibrance to take effect so I am not concerned. Taking a cruise to Alaska in two weeks so I can worry about the MBC stuff when I get back. Keep a positive attitude. There are so many great meds out there. I am on an Ibrance blog which has some very positive input and information from others. If you get on Ibrance you might google that and get on there. It is very specific to that and MBC. Very supportive. Best wishes.

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Thank you for that info. I live in Canada so in October when I get my next CT and bone scan results I will look further into that treatment if my results show an increase or my oncologist discovers more of what my situation really is. Enjoy your cruise to Alaska! That was something my husband and I planned to do before he died of a hard fought cancer

@kanaazpereira

Hi @18dee,

You may notice that I moved your discussion and combined it with this existing discussion on metastatic breast cancer. I did this as I thought it might be beneficial for you to meet other members who are talking about this type of cancer.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I can imagine that you are worried. I'm tagging @wandering @rae3 @joancecilia2017 @tula @theda to get their thoughts. According to this information about bone metastasis, "Bone pain is often the first symptom of cancer that has spread to the bone. The pain may come and go at first. It tends to be worse at night and may get better with movement.
https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/finding-bone-metastases.html

@18dee, has your doctor prescribe any bone-building medications for the osteoporosis?

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Thank you for moving my post for me as I now have had a very good response. Yes I have been on fosamax for many years (long before my breast cancer diagnosis), due to first osteopenia and now osteoporosis. We have a lot of various arthritis’ on both my mother’s and father’s side of the family. Will be anxious to see what my next bone and CT scans show in October after being off the Letrozole.

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