I read a post recently - someone saying they hoped to make it to 2028. My thoughts? Reach further...2038; the cure. Going into the new year thinking I’ve got a chance to be the miracle story.
Got my second round of folsadex shots today. Even though onco said “I expect this will fail but we have time while waiting for molecular sequencing results”...Read a positive story about a triple positive patient.
Happy New Year!
From your lips to Gods ears! I am working hard on becoming more calm, peaceful and centered. And hopeful. Started to take up meditation again. And juicing. Need to focus inward so I can function outward! All while waiting for better science!
That was me ! After getting that” 2 year average on targeted therapy”
I thought I was reaching ! Thanks for more positivity!!😺
Hey, I got almost five years from Femara (Letrozol) way before the drugs like Ibrance and Afinitor came along. Got over 9 years from Faslodex. Now, I'm on Aromasin and approaching the 15 year mark of living with mbc. On a day to day basis, I have more problems with a damaged sciatic nerve that has left me with little feeling in my feet, which causes gait and balance problems. I fell on the ice a few years ago, and fractured my ankle badly and that has added to those. Sigh! But at least those are not cancer related, lol. Good luck to you. NObody knows how long a particular med is going to work for any one of us. And for those of us without a rip roaring aggressive cancer, sometimes staying on a med that is becoming less effective, for awhile may give us more total time. More and more of us are living longer and longer, and some of the advances in research sound promising for our futures.
God I would love 9 years on faslodex!
I had 11 years on Faslodex so there is hope!!
Thank you for sharing your story, it gives me so much hope.
Which leads to a positive attitude... 😺 I hope your ankle is better soon.
Thank you. I have been almost one year on Xeloda and I am doing well. It took 8 months until I felt well but I am 90 percent back. I hosted Christmas and Easter as always. A few GI issues here and there but back to a pretty normal existence. When I talk to the SHARE people I realize there are many long term good stories. I am quite hopeful and my doctor says that is how I should feel.
Hope has no limits! ❤️
Miracles do happen. They can happen to each of us. Why not? Keep the faith!
Several suggestions. Tara Brach has a website. She has some great books and downloads. Take a look around her website. I really like her. Also Kris Carr is a stage 4 cancer thriver who has an uplifting website. Two meditation tapes, lots of resources for body and soul. When I was first diagnosed, I found her to be a great inspiration to live with “this” and still have an inspired life. There are 2 meditation apps that have free and paid content: Calm and Insight Timer. Both have free beginner meditation courses. If you are open to Buddhism, watch some Pema Chodron on You Tube. You might decide to look into her books and tapes. I have attended 2 retreats led by Pema. I always feel calmer and more centered after listening to her. Good Luck!
I’m with you Snowcone16-a cure is just around the corner! I hope to try acupuncture in 2019 and more longer walks with my two Beardies. ❤️❤️❤️
I hope you’re right re a cure..just seems too good to be true
Got my negative pants on today sorry
Barb xx
It’s ok. Just remember the negative feeling is temporary. Being positive has to become a habit...but speed bumps and hiccups along the way are ok. 🤗
Oh thank you..I’m feeling a bit low at the moment
People around me seem to be in denial whereas I know the seriousness of my condition and I seem to be the only one who’s worried
Maybe they’re just pretending and trying to be normal..which I guess is good
Barb xx
I know what you mean. Perhaps they are following our lead of putting on a brave face and moving forward?
, I really think everyone around us are really trying to not make our diagnosis front and Centre all the time. Everyone in my life doesn’t talk about it either, they ask me how I am feeling and that’s pretty much it. I told them I don’t want to talk about it all the time, and I also don’t want to be treated differently. I just want to live, it’s funny a friend of mine asked me, how I wanted her to help me deal with it and I said. It’s like someone who has diabetes , you don’t ask them every time you see them how’s your diabetes, and although this a more serious illness, the way I see it, is I have it now and it’s not going away, but I want to live a long time and will do whatever it takes to make that happen. It’s ok that you are down, and it’s great that you come here so it opens up all these great discussions and we learn from each other. Don’t ever stop being yourself and don’t ever stop talking no matter what. Big hug to all of you. 🤗
When I was diagnosed in 2004, my onc didn't say anything about survival stats but I couldn't avoid seeing some when I was on line seeking info! Median survival then was around two years but later I read a paper ("The Median is NOT the Message") online by a statistics expert saying that those survival stats absolutely are not accurate for individuals! Meaning it did not mean that I (or any one of you!) had an average expectation of living two more year only. That 2 year figure is only accurate for populations of 10,000 people with mbc and is only computed to help with health care planning and not individual expectations. The last time I found survival stats, the median survival was up to about 3 years. But again not applicable to any one of us. And people who are really really really sick when first diagnosed pull the number down. So do those with really aggressive, fast progressing cancers and cancers that do not respond to treatment. And those without the resources to follow a treatment plan. And, I suspect, those who go off to Mexico for some very iffy treatment. The same paper said the one statistic that has some meaning for us is the range of survival time, meaning the shortest to the longest! During my first year of treatment, on a mbc website, I heard of two women who lived 20 years with mbc and were still alive. A very few years later, I attended the annual Metastatic BC Network convention and there was a woman there who had been living for 30 years with MBC! Wow! I am 3 months shy of my 15th metserversity. I was diagnosed with denovo mets the month of my 58th birthday. I doubted I would make it to 65, but here I am at 72 and nobody would guess that I have advanced cancer! (I am about, however, to go get my very first pair of hearing aids and that sure makes me feel old!) So--we live as long as we live! Which actually was pretty much the same as before cancer, in terms of really not knowing ever how much time we have! Anything we can do to get rid of fears of both being dead and the dying process sure helps our quality of life while we are living! Faith helps the former. Talking with our oncs about end of life care can help with the latter. And I have been with dying people alot, both family members and others, and what I have seen has not been at all scary. Excellent pain control and comfort care, family there for support and love. Somebody here asked about meditation aides. A psychologist named Belleruth Naparstek has done alot of work on the mind body connections and has made quite a number of CDs (and iPod downloads and probably whatever the latest techie thing is) that are available at a website called healthjourneys. com (maybe .org or something else, I can never remember but I never had trouble finding it) I got the one called something like Fight Cancer, and found it really helpful. She has a very soothing voice! I got got the Surgery set and listening to it just three times before the first procedure I had after getting it was enough that when I checked into the hospital my blood pressure was normal, which it had never been before right before a procedure. So I saw that as concrete proof that I was getting alot from it. Now, all I have to do is think about listening to it and I calm right now! The therapist who played this CD at a BC retreat I attended said that California BC-BS thought the surgery CD valuable enough that it sends a copy to those it covers who are going to have surgery I don't know if that is true or not but I sure do recommend her work. She has a CD on grief, too.
Thanks for the much needed inspiration and hope 😉
PJBinMI Your story is truly remarkable and the part about statistics is so true. We are all different and statistics are general. Every time I feel down, you pop up and make me feel better. I know you are on hormone therapy but did they ever put you on another drug to kill the cancer since it was metastic from the beginning?
A psychologist named Belleruth Naparstek has done alot of work on the mind body connections and has made quite a number of CDs (and iPod downloads and probably whatever the latest techie thing is) that are available at a website called healthjourneys. com (maybe .org or something else, I can never remember but I never had trouble finding it) I got the one called something like Fight Cancer, and found it really helpful. She has a very soothing voice! I got got the Surgery set and listening to it just three times before the first procedure I had after getting it was enough that when I checked into the hospital my blood pressure was normal, which it had never been before right before a procedure. So I saw that as concrete proof that I was getting alot from it. Now, all I have to do is think about listening to it and I calm right now! The therapist who played this CD at a BC retreat I attended said that California BC-BS thought the surgery CD valuable enough that it sends a copy to those it covers who are going to have surgery I don't know if that is true or not but I sure do recommend her work. She has a CD on grief, too.
Hi Snowcone!
Thanks for your positive post. I feel the same way; I have no intention of becoming a statistic either, but look forward to the cure. A lot of people have pulled themselves back from the brink of metastatic cancer, and the same can be true for any one of us. Why does it have to happen to "someone else" who lives far away? That can be us!
By the way, I would not have been happy with your oncologist's pessimistic attitude! How does he know that your current treatment is going to fail? It might work! I can't help but feel a bit smug (I think I am entitled!) when I defy my oncologist's expectations.
Take care,
Sophie ❤
Agree. This was another fill-in dr. My oncologist was out sick.
Let's hope you don't see that oncologist again then. None of us need that kind of negativity in our lives. x
I restarted it and my mind is all over the place. They call it “monkey mind.” Don’t get discouraged if your mind darts around also. Not only will a meditation practice serve you in a healing way, but God forbid you have a setback, meditation and mindfulness will really help. Good luck.
“Staying positive doesn’t mean you have to be happy all the time. It means even on hard days you know better ones are coming”
My oncologist said I could have up to 20 years left. I was just diagnosed with MBC in the spring of this year and I’m 71 so that gets me to 91. I will be well satisfied if I make it to that age! Since my last scan showed no active lesionsin my back or hips, I’d like to think that I can accomplish that goal with the help of my oncologist. Hopefully he will be around that long!
I think the biggest thing that I have learned is that while I may not be in charge of this disease, I am in charge of the way I react to it. I refuse to be a cancer patient. Now that I have come out of the period of extreme pain caused by numerous back compression fractures caused by my lesions, I am doing almost everything I’ve done before, except maybe a little slower. My friends ask occasionally about scans but generally just expect that I will tell them good or bad news when I have it, otherwise they treat me like there is nothing wrong. My husband and I and a friend went to see the new movie Vice tonight followed by dinner. We had a lovely time and my MBC was not mentioned except when I had an extreme hot flash. Then I had to explain why I was having them again. All women sympathize with that symptom! Life is life. I like to think we got picked to have this disease because we are capable of handling it.
Thank you. That is the impression I was given. It is long term and chronic and I see other people my age living with other chronic conditions and some of them are suffering way more than myself at this time. In the last week 2 people from my church in their 70's have fallen gravely ill and 2 weeks ago they would have felt sorry for me. I am not looking at my MBC as an impending death sentence any more. I sure struggled for several months last year when I was quite unwell and first learned I had it, but I am back to feeling almost normal and I have much hope. I have met long term survivors and they are coping well. People are asking me to help with things at church and in the community and I believe they look at me as recovered and that is the way I like it.
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