I’m 53 with stage 4 breast cancer that has metastasized to my bones

[Nanilynne]

I am at stage 4 breast cancer that has spread to my bones. I am a couple months away from my 5 year mark. My husband died 2015 with prostate cancer that spread to his bones I am on the same exact meds He was taking . Has any made it past 5 years I’m so scared

[TLLS]

Hi so sorry for your loss. There are many ladies on here who are passed the 5 yr mark(I've only been diagnosed for 8 months). Medicine is constantly improving, I also have it in my bones. Sending virtual hugsAndrea x

[KimberlyB40]

Hi! I'm 41 just diagnosed w MBS in just the bones also. Following this post. best of luck!!

[Pachira]

Sorry to hear that your husband is no longer with you. What meds are you taking? I’m on Arimidex and Xgeva and many of the ladies here are on different meds as a second or 3 rd line of treatment. I’ll be 5 years this January and I don’t feel as if I’m at deaths door just yet (that can change depending on my mood lol).

[8576]

So sorry for loss. Your fear is understandable. Don't worry. I am at my 10th year with MBC. Many of us here are past the 5yr. mark. You will be alright.

Cheers, June S.

[Bettybuckets in reply to 8576]

My bone Mets came last year. I have a question for you long timers. And some days the pain is getting bad. I am just at 1 year.... does it ever get better? Or is it just slowly worse Snd worse pain. Maybe if I give in and start narcotics but have wanted to stave off that as then have to deal with constipation. Im already thinking how long can I do this?

[Gizwil in reply to Bettybuckets]

I am into year 10 and have been on more treatments then I can remember. I was leary of pain pills but live on them now. It makes me feel normal. I take OxyContin 3-4 times a day. Gabapentin (2 at a time) for neuropathy. I just started a sleeping pill. It may sound like a lot but it works. Constipation was a problem but now I take Dr Schultz Intestinal formula and no longer have an issue. I started with formula #1 and am now on the Advanced formula. It works naturally and is soooo much better than store remedies. The sleeping pill keeps me asleep all night without pain. I can only sleep on my back and if I get on my side in the middle of the night the pain is terrible. Sleeping through the night is wonderful. I am now researching red light for my neuropathy.Good luck, think positive, and incorporate what makes you feel normal—not sick and dying! You can do this and feel good about yourself 😊

[Bettybuckets in reply to Gizwil]

That was just what I needed to hear! Thank you! I went for a 2 hr cycle today with friends and hit the wrong break coming down a Hill and went right over the handle bars onto my hip! I’m getting scanned in 2 weeks and won’t be surprised if there is now compression fracture... darn! But I want to keep doing the things I love.

[Hidden in reply to Gizwil]

That’s very informative and helpful, thank youClare

[8576 in reply to Bettybuckets]

Sorry you are struggling. Not so nice to deal with. Everyone's pain is different. I started Oxycocet years ago and it helps tremendously for me. I take one tablet in the morning and sometimes if I need it one later in the day. (not often). It is one percent Oxycocet and the rest is tylenol. I have never changed the doseage. So not a problem.

My doctor wanted me to switch to Lyrica. So I take one at night. Good to get me up in the morning. I still take my Oxycocet as well.

This has worked for years. I don't have a lot of pain from my cancer. Mostly from Arthritis.

I can have the constipation problem as well from meds but I find if I eat lots of fibre it is not there.

Cheers, June S.

[viennagirl in reply to 8576]

You always cheer me up June. Hug Marlene

[8576 in reply to viennagirl]

Glad to hear that Marlene. It is really heartening to know my old lady ramblings have a positive effect. (Although I don't feel old. Just slowed down a little.) That is what we are here for, to cheer each other up and pass on tidbits of information.

Cheers, June S.

[Hidden in reply to 8576]

❤❤❤❤🙏🏼🙏🏼🙏🏼🙏🏼 Ty for giving me hope. My wife has just been diagnosed. We have 2 small Children 4 and 6!🙏🏼

[Rhwright12]

Will be 5 years on June 24th! We are living longer and longer…New meds and vaccines coming on board all the time. I’m actually planning my 3rd Disney trip for October…😀

[viennagirl in reply to Rhwright12]

With Covid restrictions slowly being lifted I hope to go traveling too. I am so happy to hear you are well enough to joy a trip to Disney Land. Hugs Marlene

[ChrisVict]

My onc told me bones was the best place to get it because there are people that Go on a longtime with it. Listen to your onc and try to keep it contained in bones. It’s different for everyone.

[Lnlc]

Oh my -- what a lot to handle and how frightening. I am so sorry for your loss. If it helps, I'll be starting my 9th year this month. My first diagnosis was in 1995 and then I found it had metastasized to my bones in June of 2013. So far, it's stayed in the bone but I have tons of disease. I've been on many different protocols and have managed to keep active and relatively well (I know that's so strange to say when you have cancer) throughout. I wish you strength, peace, wonderful care and great results as you go through this. xoxo Ellen

[viennagirl in reply to Lnlc]

Thank you Ellen for sharing. This kind of information sure helps us new comers. I am not exactly a new comer but I feel like one. It is two years for me and so far I am doing well. When I hear from mbc survivors like you I just feel so optimistic. Hugs Marlene

[mswheeze]

Have you had radiation? It worked wonders for me. Also, reconsider taking pain meds. Why put your body thru more stress from the pain. Plus, your quality of life might improve. Yes there are side effects from pain meds, and the constipation can be managed.

I take a stool softener and a senna-plus in the am and again in the pm. If I’m taking extra pain meds for breakthru during the day, I’ll take another softener. There is a max # of softeners you can take in one day. I think it’s 8. I’ve never reached that amount. There are also suppositories that your doc can prescribe for when the constipation has become overwhelming. Just beware of the buildup of anti-c meds might lead to diarrhea after things break loose. It took me a few attempts to find the right formula. There’s also the suggestion on this site of eating more fiber and trying Dr Scholl’s intestinal med, which I now plan to try.

Please start the pain meds. Don’t let the body suffer more than it needs now. I’d rather cope w/hard stools than the pain of met bone cancer, which like you and others here I also have going on. Radiation + oxy + constipation products have helped me enormously, ESP the radiation.

kris

[diamags]

I'm working towards 8 years this fall. Bone mets as well.

[viennagirl]

Hello Nanilynne. I feel sad for you. It is not easy to be alone when you are ill so I understand that you are scared. It is good to talk to the ladies here on Unlocked and share your sorrows. We all understand. I think you can tell from the many responses that you have received that there is lots of hope for you to feel well again and live a long time. My heart goes out to you. Just remember you are not alone and there is a lot of hope now for getting to a place where you can feel good again. I try to think positive every day. And try to incorporate lots of things into my daily regimen that sound like good advice. Some people do well by changing their diet. I am now just trying to make sure I get a good balance of fresh foods but I am not a vegetarian although that might help me. I tried that but I feel better with a bit more meat in my diet so I think diet is just a very personal thing. I am at the two year stage with Letrozole and Ibrance and I feel pretty good and lately I have lots of energy. And my cancer has not progressed. Sometimes my back (ribs) ache but I usually just rest and feel okay again. I have a Wave Mat and quite often will rest on it and read a book. The Wave Mat is supposed to give off ions that are healing and it also provides some infra red rays which are also supposed to be very healing. I don't know what is working for me so far but I also believe the drugs I take are helping me. So I am very grateful for the drugs. So stay positive. You will get well. Hugs Marlene

[Thatflowerlady]

Hi I am past the 5 years since MBC a diagnosis . I am 57 years old. I seem to need to change treatment due to progression about every 20-24 months . So far my quality of life is good . As for the pain I have found it comes and goes depending on the treatment side effects and sometimes other health issues not related to MBC . I take the medications prescribed for pain , I really don’t want to be living in pain for the rest of my time . I hope you find a solution to your pain , it can make everything unpleasant.

Luann

[Hidden]

Hi Nanilynne -

I'm so sorry for what you're going through, especially given what you've experienced with your husband...

My situation was/is very similar to yours. I was dx'd with bone mets one month shy of my 5 year "anniversary" of the original dx. This was 6.5 years ago and I'm doing quite well, i.e. I have widespread bone mets but am basically asymptomatic, on my second-line treatment (which appears to be on the brink of failing, but I can't complain... ).

As you know, every case, every cancer, and every *body* is different, so what works for me might not work for you. Even to say that what I do is "working" for me is questionable, i.e. I can't really know what makes a difference vs. doesn't...

But...

Here's what I'd point to as possibly extending my life.

First, to the degree possible, I drag my heels on changing treatment. I still regret my first/only change 2.75 years ago from Ibrance + Letrozole to Ibrance + Faslo because it was based on the alleged appearance of two new small mets...I say alleged b/c it was based on a PET scan (I now use only CT's for these decisions) done at a different facility from where I had been having scans...I swear they had that machine turned up to "eleven" because the SUV/avidity/heat of all my mets essentially doubled...a few scans later when I had a PET/CT at a different place, they all halved...hmmmm...I understand that CT's are much clearer/more accurate in measuring and counting mets. (BTW, I'll mention here a global statement that my understanding of all things medical is fuzzy...so please don't take anything I say as gospel...).

I've now had progression on two scans in a row (6/2020 and 3/2021...see, I even postpone getting scans so I can delay any info that would warrant a change), the first with growth of existing mets (many docs now don't change for just some growth...) and the second with the appearance of new mets. Still no treatment change...I think if you look at girlspitz's posts you'll see that she is like-minded/also not changing in spite of progression...

Also (this response is already much too long...), in descending order of what I "think"/more likely imagine is effectiveness: Exercise, as hard as possible, cardio AND resistance, to the degree possible; Fast, ideally 24-48 hours, but at a minimum "intermittent fasting", 16+/8-; consider things like the Care Oncology protocol (this is highly debated, but I categorize it as "why not?", although I follow it only partially...); juicing/ various supplements discussed on this board (which I don't do...except for D3 + K2, which are *essential*!!. I also went vegan after dx although this was for ethical, not medical reasons.

Side note, I've chosen to conclude that wine is good for me.

If you want any detail/support for what I've described above, please just let me know...It's based on various studies, convos with docs, learnings from this community, and some compelling personal experience.

My very best to you...

Lynn

[Hidden in reply to Hidden]

Oh! One more thing...Far Infrared (aka FIR)...some people use an FIR sauna but I prefer a heating pad (the ones with tourmaline increase penetration, as per an NIH/NCBI study...). I turn mine as hot as i can bear it and apply it to the bones where most of my mets are, e.g. spine, lower back...As with my other reco's, there are real studies in support of this, please let me know if you'd like me to find my references...(or google/search, I use NIH/NCBI and university studies, not like press releases ).

[SeattleMom]

Hello, Nan!I was diagnosed with extensive mets to spine and iliac 4 1/2 years ago. I am now on my third line of treatment but there is HOPE in a variety of treatments that can extend your life. It is not a death sentence. God bless you! You are in my heart and prayers!!

Linda

💗💗🙏🏻🙏🏻

[PJBinMI]

I hit the 17 year mark, with bone mets all this time, on 3/1/21! If you saw me out and about you would not guess that I am dealing with major health issues, or that I am 75. I don't know how I missed your note as I would have reached out to you immediately to help put your mind at ease! One of my ways of coping has been to learn all I can about bc and mbc and bone mets. I've attended quite a few BC and MBC conferences and met alot of women with MBC. Including many who have had MBC longer than I have and are still alive. At the first conference I attended, there was a 30 year survivor! The first year I had mbc was the hardest emotionally, and near the end of that year I read about two 20 year survivors and that sure helped me feel more hopeful. You have at least two things going for you: age and bone mets only. Older women tend to have less aggressive bc than younger women (so unfair to the younger women!) And people rarely die from bone mets.

Do take extra care of yourself! Losing your husband must be devastating! Most hospice programs have groups for those who have lost a spouse and I believe that they ask people to wait until it's been six months since that death. That might be really helpful for you--a safe place to talk about your husband, loss, grief, etc I hope you have good family and friends that you can get support from and opportunities to have some fun.

My first and long time onc, of over 14 years, lost her physician husband to cancer (I can't remember the type which is too typical of my memory these days) and her way of coping was to get back to work asap. I thought that was a bit strange but she loved her work and loved her patients and I was sure glad she was my onc! But I know that losing him really hit her hard!

Sending love, cyberhugs and prayers, dear sister in mets......

[rubyc1234]

I am 3 years and 4 months into MBC and I am greatly encouraged by this site. Many women make it beyond 5 years. I am not expecting to die for a very long time. In the beginning I was so depressed and had anxiety attacks and then I started to talk with women who were many years into this journey. I realized that much can be done to keep us going and living a good quality of life,

[RLN-overcomer]

Sister/warrior I have a friend who had breast cancer 25 years ago. She had a recurrence in her bones 10 years. She is stable . She told me she is fine, and will not die from bone metastasis. She is a retired nurse. I do hope pray this will ease your worrying. Amen😇