I’ve been reading your posts silently for the past week but thought it was time to jump in. You seem like such a supportive and wonderful group of people. I am honored to join you. A bit about myself - 11 years ago I was diagnosed with stage two invasive dictaphone carcinomaI. I had radiation and took tamoxifen for 10 years. I had 11 glorious years with no recurrence. However this past November, right before Thanksgiving I was diagnosed with MBC with bone Mets. Went through radiation which relieved much of the pain in my back and I’m now about to complete my third month of Ibrance 100 mg and letrozole. It is indeed a scary journey but I do my best to stay extremely positive and to Live life fully and beautifully. But it’s not always easy as you all know. I feel like Ibrance is a lifeline and although I have had neutropenia a few times I have had very few side effects. My biggest concern is how long will I be able to stay on this miracle drug and then what happens. I find that the information that my oncologist gives me is a bit vague on the future. I think she wants me to just concentrate on the now which I understand is important. But it is still so difficult when I have the most amazing, supportive, and lovinghusband in the world and two loving children in the early 20s. I never expected this to happen at 61 years old. I so desperately want to see my children marry and hold my grandchildren. But life is a narrow bridge no one knows how many days or years we have. I’m just sharing my deepest concerns with all of you. I’m sending positive vibes out to all of you extraordinary people fighting the good fight day after day.
Written by
Allthatjazz
To view profiles and participate in discussions please or .
Hello and welcome! I too was diagnosed with Stage 2 Bc in November 2012 but instead of being given the all clear after 5 years, I was diagnosed with MBC to the mediastinal and hilar lymph nodes as well as nodes in the lungs. Scary huh! I will be turning 61 in July so we share the same feelings - that of wanting to see our children get married and get to hold our grandchildren. Alas, I have 3 daughters but they have no boyfriends. So I am really hoping to outsmart this disease! I started Ibrance/Faslodex in July 2018 and my last scan was stable. I would have preferred to be told that there was regression but stable is better than progression so I can’t complain. Like you, I too wonder when Ibrance/Faslodex will stop working for me. I have read that some of our sister warriors have been on it for 3, 4 or more years. Praying, wishing and hoping that we too have a long run on Ibrance.
Thanks for the welcome. Sounds like we Are at similar points in our lives. I am so happy that you are stable. I have a scan coming up next week and hope and pray for a good result. Thanks for sharing the encouraging news of those that have been on Ibrance for three or four years. That is quite amazing, as is this drug. Onward and upward!
My oncologist told me I will stay on it till it stops working and then we can change out the Letrozole for something else. After that there are other drugs to try and there are always clinical trials. We just have to continue on and how that one of these trials will produce a life saver. This is a great group for support.
Thanks for the encouragement. I believe Ibrance has only been around since 2013 so who knows what is around the corner. I agree that this is a great support group and I’m so happy to be a part of it. Thanks for your note.
Thanks for the encouragement. I believe Ibrance has only been around since 2013 so who knows what is around the corner. I agree that this is a great support group and I’m so happy to be a part of it. Thanks for your note.
HI there- I want to share that 17 months ago I was diagnosed stage 4 MBC w/ many bone mets. My first diagnosis was in 2011 and I tried to do alternative methods & kept working as a teacher. Right before Thanksgiving 2017 I was hospitalized with 2 bone fractures (femur & T10) and had one surgery on my femur. My spinal fracture was healed with Ibrance, letrozole & Xgeva treatment & using a hard shell brace for several months.
I have yet to achieve NED and recent scans still show mets in my bones (but not legs & arms which are typical spots for them) and no visceral organs involved. My markers hover around the mid-100s and came down from about 1700.
What I want to share is that I've been able to get back to doing 'the plank' exercise now at 90 seconds. 20 months ago I struggled getting up from the floor. I don't know how much of the mets in my bones can be undone BUT treatment has renewed my strength and willingness to try.
Currently, I am focusing on what I eat and have realized some of my diet has been estrogenic & counter-productive to my meds. I've seen if I binge on sugar or even healthy asparagus that my meds don't seem to work so well (i.e., I see lots of bubbles in my urine during treatment).
Anyway I hope I have encouraged you. Last spring I really went through a funk once I really started looking up my situation & diagnosis. I still have ups & downs (quite often in the course of one day), but God keeps helping me see what to focus on and tweak (like w/ my diet).
I have three 30-something kiddos and 2 grandchildren but they all live elsewhere. I am 63, early retired, thankful that Marketplace insurance was available & have about 13 more months to Medicare.
Thanks so much for sharing your Journey. Sounds like you are doing extremely well. My markers are also quite high but I hope to see them move downward as time passes. Do you have encouraged me and for that I am most grateful.
Thanks, Marioots. It really is quite comforting to meet others that are so supportive and going through this difficult prognosis together. Wonderful to have a forum like this and I do indeed feel blessed to have you all.
Welcome, there are wonderful ladies here and just reading their posts have given me strength. I am 61 next month, have 2 grown children, 41 and 39 years old. I also have 3 granddaughters. They all live in Texas except for daughter, she moved here to Indiana 6 months ago. I just passed the 4 year mark on original diagnosis and have been in treatment MBC for a year. I am on Ibrance/Faslodex. My lung tumors have stabilize.
I’m With you on the children and the grandchildren! I am 69, I had my last child when I was 45. My oldest daughter will be 40, married and they cant have children. My next oldest son is 29, was just married last weekend and I’m pushing for grandchildren quickly! My other two children our daughter, 27 and son 23 either married. Every day I pray that I am blessed to see at least one grandchild. My mother died at 52 with this disease Never saw me married or any of my children. Although, I believe she sees us every day isn’t really quite the same for us here left on earth. Although, I am doing remarkably well with MBC, I know obvious cancer that to be found at this point, I is the rest of you, know how fragile life is especially given the diagnoses that we live with. Keep our faith try to eat well breathe well and do what we can to keep Happy and healthy for as long as we have. I think it is critically important to have goals to keep us going. Grand child goal is a good one
Let’s hope that we can share photos of grandchildren in years to come! Wonderful to hear that you are doing so well. Sending positive thoughts your way!
Hello and welcome to this site!
I agree that having a good attitude helps. As to thinking ahead to the next line of treatment, I try not to go there yet. I am not on Ibrance, as so many of you ladies on here are, and I have been stable since my CT scan last August. So there are other drugs out there that can have just as good an effect on metastatic breast cancer, other than Ibrance. It worried me at first when everyone seemed to be talking about Ibrance. I thought I was missing out, but I feel happy with the treatment plan I am on.
Wonderful to hear there are other drugs out there that can help with MBC and that you are doing well. I agree that it is probably best not to think of what comes next in terms of new treatments. But there are many brilliant minds working on new ways to manage this disease and I have faith that we will be the beneficiaries of new drugs. Enjoy this beautiful day!
Thank you! I still plan to ask my oncologist about Ibrance when I see her next month and see what she says. Enjoy your day too. It's been another hot one. I have a feeling we are in for another heatwave this year.
Let’s hope that we can share photos of grandchildren in years to come! Wonderful to hear that you are doing so well. Sending positive thoughts your way!
Wonderful to hear there are other drugs out there that can help with MBC and that you are doing well. I agree that it is probably best not to think of what comes next in terms of new treatments. But there are many brilliant minds working on new ways to manage this disease and I have faith that we will be the beneficiaries of new drugs. Enjoy this beautiful day!
Hi Allthatjazz! I was diagnosed at 51 with MBC and have been living with it for 5 years. I too was bothered by the vague nature of my future when I asked. When I finally got to my current onc and asked if there was a "Plan B" for when my current protocol failed, he assured me that there were many plans, but until there are signs of recurrance, it would be hard to know which plan would be appropriate. Now that, I thought, was reasonable. The good news is that my original regimen was Faslodex, Arimidex and Xgeva -- and I am still on that! Knock on wood. Scans next month....
So wonderful to hear that you have been living with MBC for five years.Amazing that your original drug combo is still working. This really gives me hope! Thanks for sharing.
Aw Allthatjazz, I feel so bad for you! I'm 61 too and had my first does today, and I desperately what to be a miracle drug. I too have wonderful husband and I'm ready to leave him yet. I'm so damn scared all the time, and cry whenever I'm alone. I too send good vobe to you all. Thank you for being here for me!
Hi Tarana, I completely understand how you are feeling. Please try and stay positive and believe that the many drug combinations that are out there are quite miraculous. It is indeed a scary diagnosis but I believe this is a controllable disease and we will all do well. Sending positive vibes your way!
Welcome, Allthajazz. I am also fairly new here. I was diagnosed last year, at age 78, with lumps in my breast and 2 lymph nodes. I stared with Tamoxifen for 3 months, but that didn’t work. Now I am on Ibrance and Faslodex and last scan show all 3 lumps have shrunk some. I have 4 grandchildren, one married and one recently engaged. Hoping for a great grandchild in the near future. In the meantime time, I am busy knitting baby stuff. Hang in there.
Thanks for the warm welcome, Tess. Sounds like you are doing well. Wow! How amazing to be thinking about a great grand child. That is indeed quite a blessing. Stay well and positive!
So wonderful to hear that you have been living with MBC for five years.Amazing that your original drug combo is still working. This really gives me hope! Thanks for sharing.
Hi Sandra, sounds like you have such a wonderful and positive attitude. I am also learning not think too far in the future but to feel very positive about where I am today and to enjoy everything that life has to offer. I do feel as time goes by that this really is a manageable disease and we will all do well. Hanks for sharing
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Two pet scans cancer free 
Introducing myself
Is anyone having side effects of the Ibrance, Faslodex and Xgeva? 
Results after needle biopsy of lung... 
Letrozole and Ibrance is it working? 
