I’m just 3 months into my MBC world . I got diagnosed with Stage 1 breast ca 25 years ago…no relapse until a few months ago.
Honestly, I’m fine but can’t help wondering how long I will have and will i want to continue taking meds with bad side effects?
Thank you
Hi, I understand how you feel. One of the first questions I asked my oncologist was “how long do I have?” I think she was a bit shocked…but then again her opening line had been “ I can not cure your cancer” and I honestly didn’t hear much after that. But to cut a long story short without ever giving me a time frame in her answer, I was very much reassured that nowadays cancer can be controlled much more and that there are so many treatment options available that even if one fails the many other possibilities can also prolong our longevity….on the spot she did a mental count and said there were more than 20 currently approved treatments that she would recommend for me and many more soon to be available.You can see from the posts here…everyone’s experience and reaction to meds are quite different…there might be shared side effects for some people while others have no side effects at all. Many people change meds because of a reaction or complication and start an alternative prescription….you don’t have to wait for the meds to stop working. Most oncologists also consider quality of life as well as quantity.
It’s important to have these discussions with your oncologist and to form a trusting relationship….on a positive I have almost no side effects at all with Ibrance ….so I would definitely say yes take the meds!!
It’s early days yet…I promise it will get easier soon!
Take care, Zoe xx
Hi Peggypilot,
Welcome to the community, I'm sure you'll get great support and info here...
I'm sorry for what you're going through...Those first few months can be especially difficult...
Regarding your comment re: being fine (that's great!) but worrying about the meds and *potential* side-effects, etc...Many of us find that the meds cause few if any side-effects. Fatigue? Almost certainly...but if you're in a position to "simply" do less, rest more, that's an effective remedy...
When I read that sentence you wrote, what popped into my mind was "Don't borrow trouble"....not sure it applies, but my point is, I'd focus on the part about "I'm fine..." and just take each treatment as it comes, with an open mind, and my guess is that some or all will go down easier than you might think... 
p.s. My memory (never reliable...) tells me that time between initial and metastatic dx is one of the best indicators of prognosis, meaning the longer you last between the two, the better you'll fare....I hope this holds true for you!
Best,
Lynn
Thank you so much Lynn for taking the time to respond… I think we all have our up and down days but always so good to hear from a fellow traveler with a positive outlook. So grateful to have found this site.
hi Peggy.
i empathize with you! and i empathize with your struggle at present.
we have all gone through our own version/experience of getting this mbc diagnosis. and a common reaction is shock...(as already mentioned above!). how could you not be? especially after 25 years! your mortality has just been thrown in your face. then followed by lots of info and statistics and various information and advice etc...brain overload😳. it is overwhelming! and at same time, you are expected to make important treatment decisions.
my suggestion....slow the roll a bit. you are already on the letrozole... so you are technically treating your ER+ mbc cancer. and you've probably had this mbc for a while before diagnosis. so what's a couple more months before adding another med to your treatment plan, or not. give yourself some time to absorb your new diagnosis. and time to find out more about verzenio, ask questions like you already are doing, do more research, use this site, have another conversation with your oncologist blah blah. you will likely be in a better place emotionally to make your decision. and intellectually, in a better position to weigh the pros and cons and make an 'informed decision'. (Peggy....these are just my thoughts)
you are the pilot of your plane!😉
please reach out anytime.
sending hugs....
carole💛
ps. i love your avatar pic.
Hi there and welcome.The first few months are very emotional with this disease. You will find your normal and learn to live between scan dates.
If this helps, I am 3 years in on Letrozole and Ibrance. I am 53 and still working, raising a family and enjoying walking and cycling. Side effects are small enough to be worthwhile for the good they are doing.
Wishing you well
Clare
It’s totally understandable to feel as you do, we have all been ‘put on notice’ as if were and I’ve been where you have been
I wish I hadn’t asked my Oncologist for the prognosis as that “hung” over me for quite a while. However I am not a statistic- we are all individual and the actions I take each and every day try to ensure that I live my life well
Sophie Sabbage who wrote the brilliant book ‘Cancer Whisperer’ talks about the fact that we are all terminal every human on this planet but no one knows when their time will be up. We’ve been given a reminder of how precious life is and I continue to empower myself to live well with my diagnosis whilst exploring what can I improve in my terrain at a fundamental level to change the environment surrounding each cell (Nasha Winters book Metabolic Approach to Cancer is well worth a read)
Hi Peggy: I can understand your feelings. I was diagnosed with Stage 2 BC in 1991. 27 years later in 2019 I was diagnosed with MBC of the liver. I was shocked and my doctors were also. I did not ask my oncologist how long I have to live. I did not want to hear statistics. Everyone is different. I am still on my first line of treatment of Faslodex only. I have difficulty swallowing pills, so my oncologist decided to try Faslodex only. Three years later my scans are still stable and there is no progression. I have an MRI every 4-5 months now. When I was first diagnosed, I had an MRI every three months. My liver function tests are in the normal range and tumor markers have always been normal. I feel good but do get fatigued at times. I have a granddaughter that is turning four next week. When I was first diagnosed, I didn't think I would be here to see her turn four. Now I am hoping I will see her turn five, six, seven and hopefully 10. Good luck to all of us in our journey.
Hi, Peggy!
Your situation so similar to mine. I was first diagnosed with BC in 2000, at age 51. All was fine for the next 17 years; and then diagnosed with MBC to bones (primarily spine and iliac) in November 2017. I started out on combo of Ibrance and Letrozole which remained effective until progression in August 2020.
I then moved to Faslodex monotherapy for the next nine months. This was my favorite therapy. Just a shot to each side of butt once a month. I wish it had lasted forever.
Switched to Capecitabine in June 2021, which I believe was totally wrong therapy; it's what is referred to as "chemo light" and did nothing to stop mild progression of my mets. I was on Cap for nine months before being switched to a new protocol last month.
Just started a combo of Piqray with a trial drug called Amcenestrant. I had a lot of trouble with rash in the first couple of weeks which was finally resolved with Zyrteq. In summary, I am on my fourth treatment regimen, so you can see that there are many options out there.
I have now had MBC for 4 1/2 years; all of the therapies have definitely saddled me with more fatigue than normal but any other side effects have been pretty well managed. Don't give up hope, no matter what therapy is prescribed. There are so many women on this blog who can offer encouragement and info about how they handled side effects; many have had MBC for years.
God bless you, Peggy!
Linda
Thank you so much Linda in Seattle. I used to live in Vancouver CA many years ago. Love the area.I really appreciate your thoughtful response. I am starting with verzenio next week, already on Letrozole.
I wish you all the best with your new treatment and the strength to endure.
Thank you again and God bless you too.
Just out of curiosity, Peggy, is there any reason why they didn't pair your Letrozole with Ibrance? That is a pretty common protocol and has worked very well for many patients. Linda
Good question…My onc feels that verenzio is a better drug as you take it without a break. I had thought it would be Ibrance also. Would appreciate any info
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