Has anyone here had mbc for 5 years or more

[Barbteeth]

Morning ladies

Just wondering how many of you ladies have had mbc for a long time and still doing well

I noticed recently that the majority on here are newly diagnosed or a year or two in

Need reassurance really

Barb xx

[nstonerocks]

I don’t know if you can call it a long time but was diagnosed in July 2014. Mets to lungs. In pretty good shape but scans in February. Fingers crossed.

[Wintervt in reply to nstonerocks]

Nstonerocks,

Are you still working as a school nurse? I'm a former math teacher but now I'm a school administrator and work in our central office. I visit schools quite often but when I'm at the end of my Ibrance cycle I typically stay at the office, as I don't want to risk catching anything. If you have some tricks of the trade (in protecting yourself from germs) please let me know!

xo Jade

[nstonerocks in reply to Wintervt]

No tricks. I’m lucky. I do take chaga mushroom tincture and juice kale. I seem to get sick once a year. Last year I had a mild pneumonia with all the kids w flu who also had pneumonia. Otherwise handwashing. And luck?

[theresac1 in reply to Wintervt]

Hi, I am a 5th grade teacher, and am around kids all day. I have a diffuser in my classroom, which I use everyday. The kids love the smell in the classroom, and I use oils that are supposed to help the immune system. I don't know if this is helping. BUT thank God, I have not been sick for the entire time I've been on the Ibrance. (June 2017). In addition, I have sent kids to the office, knowing they have a fever, they come to school, sick, coughing, etc. I am always making sure I wash my hands. My family and anyone that comes to our house, washes their hands immediately when they arrive. (my husband insists on this). Prayers to our health! Theresa

I also juice, take vitamins, drink Kangan Alkaline 9.5 water, and watch what I eat.

[Wintervt in reply to theresac1]

You are a rockstar! Are you exhausted by the end of the day? What do you do on days when you are not feeling 💯? Do your students and colleagues know you have MBC?

Sending ♥️ Jade

[theresac1 in reply to Wintervt]

I have never been a good sleeper, but I know I need 8-9 hours naturally. I get about 7 a night. However, prior to my diagnosis I could go on 5 hours of sleep. I can no longer do that, so I get ready for bed around 9:30-10, and try to take care of myself that way, but still only get about 7 hours of sleep the nights that I work. Whenever, I have felt like I was starting to catch "something", I load up on vitamin C, drink Ginger tea, and get my rest. I have called in sick to work, (once) when I felt that. I have been very fortunate and thank God that I haven't gotten the flu, or cold viruses. My colleagues know that I have Stage 4 BC, but my students do not. They know that I have a port for my medicine (Zometa infusions). I have a little girl in my class that also has a port. She is waiting for a Kidney transplant. So she and I have a little bond. . I have told them that my immune system is low, and that is why I have the diffuser in the classroom. Very few of my friends know that I have BC. I have kept it quiet, and have only let people that are close to me know my condition. I feel that there is really no need for all people to know.

[Wintervt in reply to theresac1]

I am just blown away! You are amazing! When were you diagnosed? How long have you been teaching? Like you very few people know that I have MBC. My superintendent is a breast cancer survivor and has been amazing! When I was diagnosed she refused to let me quit and to be quite honest I’m glad that I’ve continued to work.

Sending ♥️

[Hidden]

Hi Barbteeth... I'm "only" four years in, but I do have a hypothesis that might be relevant...

I became aware of this sight via some marketing effort, I think it might have been a post card. Whatever it was, based in part on the timing, I recall thinking that Pfizer had given my name to the organization, for some business purpose (I imagined - again, based on almost nothing - that it was to listen in on feedback from Ibrance users...which is not uncommon and is valuable to the marketers), which annoyed me a bit.

I also noticed that it was a small group of women (vs., say, breast cancer.org boards) and almost everyone seemed relatively new to this (initially the same "vintage" as me...).

BTW, if you look at the "about us" and/or "business" links below you will see that this site's business model is used in support of industries like pharma. healthunlocked.com/about/bu......

ANYWAY, my point is, I think we are not a random sample, we are mostly relatively new. I also assume that some/many others, like me, were steered to the site. Maybe Pfizer, maybe someone else paid for those efforts, i don't know. But it almost stops mattering, we're here, we get value (I should add: To the Big Pharma Marketing Director Reading This, We Know You're There!!!! )

Other sites seem to have more long-term survivors so you might try other sites, too (although this site is the best, e.g. easiest to use and I generally like the smaller group, i.e. I'm not really a social media type user but I really do feel like I'm getting to know some of the women here... ).

Just my random thoughts...

[Barbteeth in reply to Hidden]

Hi

Thank you for your detailed reply

It all makes sense now...I like this small group of like minded ladies and feel comfortable on here and feel I can divulge things that I maybe wouldn’t do with close family or friends

Barb xx

[Hidden]

Hey, Barb. I was dx stage 4 with the liver met exactly 5 years ago and feel I am doing ok but one can never completely relax, I find. I just try to live by the day

and thank goodness for this site where I can let my hair down on those crummy days. I did go to another site soon after my diagnosis but found it a bit impersonal and sometimes downright depressing.

[Jaxon2007]

Great question Barbteeth, I too would like to know

[Collswims]

Hi Barb, I was dx stage IV de novo in 2013. I am still on my first line of treatment with no recurrence, no surgery and no radiation. Mentally I do ok but of course there is the thought of when will the other shoe drop. Hang in there and live life like cancer doesn’t exist!

[Barbteeth in reply to Collswims]

You definitely have the right attitude

Pleased for your success with treatments..hope I’m like you

Barb xx

[Juliandrea in reply to Collswims]

Congratulations!!! I wish all of us that are new the same success. Of course we will always worry, but your story gives us all hope. Thank you for sharing. I wish you continued good news. What treatment have you been on since diagnosis?

[kduck in reply to Collswims]

What are your treatments?

[theresac1 in reply to Collswims]

What is your first line of treatment? I also had no radiation, or chemo, but had surgery.

[barbarac76]

Hi Barb,

I was diagnosed with MBC in August 2013 - lungs, lymph nodes, and T9 vertebrae. Three treatments, so far: Letrozole, Exemestane and Afinitor, Faslodex and Ibrance. My recent PTscan showed possible, slight progression so after getting an MRI, I may have to start Xeloda (oral chemo). Throughout I've been on Zometa - just recently switched to Xgeva.

Don't know how I got onto this site. An email just appeared one day. I thought the common thread was Ibrance.

[diamags]

Hi Barb, I was diagnosed with MBC in October of 2013, and yesterday got another No Progression of Disease, so I'm at 5 years and change. Every time I get scans, it scares the daylights out of me, but yes, it gets a little more manageable with time. Maybe the "new normal" is becoming "normal." I do think part of the initial pain is that we so want our old life back and no matter what we do, we can not have it. At least I know for me, that was part of the issue. With that, there comes grieving for the loss. There are a lot of losses. I did cry a lot. I did not hide my illness from others. Some were wonderful, some were not -- but at least I knew/know who was with me. As time wore on, I needed to talk about it less and found ways to deal with it. However, I will not lie and say that life is easy peasy. It's not. I would say that the thing that helped me the most was just beating the subject to death. There just came a day where I could cry no longer. If you're feeling depression or loss, please reach out for help. Some things are bigger than we are, and this is one of them.

[Barbteeth in reply to diamags]

Hi

Well I’ve just seen my oncologist and everything stable but markers keep creeping up so having another scan in 2 months..I had a pleural effusion which has disappeared so the Ibrance/letrazole combo is doing something

I’ve cried and cried so much for the old me who can’t ever come back but I’m trying to get used to the new way of living

I’ve started some therapy which hopefully will help

Thanks for your reply..very inspiring

Barb xx

[diamags in reply to Barbteeth]

Barb, please remember that dealing with this will take as long as it takes. You're taking positive steps and that is the best you can do. You need to give yourself a pat on the back.

[Barbteeth in reply to diamags]

I know you are right and I’m trying to address things

I’m living on a knife edge emotionally and just one unkind word can send me into a rage or floods of tears...not like me at all...I was such an active fun loving person and that’s gone

Thanks for your lovely reply

Barb xx

[diamags in reply to Barbteeth]

Barb, sometimes that's how it goes. You're dealing with something really, really big right now and that can and will bring out really, really big reactions. If some are inappropriate (in the case of rage -- I know this reaction...), apologize to those affected, explain that you're working on this and move along. Honestly, most people will understand. Those who don't? Oh well -- next! (You can't change them, move on.) This is a truly horrible diagnosis, you have to give yourself a little room to process it. You need to be really kind to yourself. Sometimes, that's just sitting down and breathing slowly. The more you let this move through you emotionally, the more you'll find parts of your old self coming back. Unfortunately, it can't be hurried. It takes as long as it takes.

[Barbteeth in reply to diamags]

Thank you for that..I see you understand exactly how I feel sometimes and that it’s normal (!!)

Barb xx

[diamags in reply to Barbteeth]

It is normal. What's not normal is being happy and cheerful everyday. That's delusional!

[Sebina in reply to diamags]

Diamags 😘❤️

[nstonerocks in reply to diamags]

Amen

[1998withStage4]

I was diagnosed with metastatic breast cancer in my bones in 1998. I think you're seeing on this site posts from those more recently diagnosed with MBC because they have a lot of questions where "old timers" like me usually respond to some questions or post when we change treatment or experience progression. Us old timers have already worked through most of the issues posted by the newbies so we're not as active on the site. (If you want to look at my medical experience, you can check out my blog at catsncancer.com - I've listed all of the treatments I've been on for 20+ years.) Facebook has a group for those "Outliers" living 5 or more years with MBC. We don't post very much but it's good knowing there are others out there who appear to be beating the odds for now.

[Barbteeth in reply to 1998withStage4]

Wow you are doing incredibly well

My mbc is in my bones..many lesions but mainly sclerotic so I’ve only had one fracture thank goodness

I do hope my treatment can keep me going for some years as I have lots to look forward to..my daughters wedding in September and I’m hoping for a grandchild from my older daughter..I don’t want to miss events like this

I understand now about why the old timers don’t post as much and that has really reassured me..strange how things can get muddled in your head

Thank you so much

Barb xx

[lmiller046 in reply to 1998withStage4]

I am so grateful to have heard that as well. I am new to this site and so glad I found these woman. I am over a year now to MBC. I dont really post a lot but read. I stay busy with our business and 2 kids. I knew there are woman out there that have been facing for a very long time. My grandma was one. She passed away after 16 years, but not to MBC but of age. I cant wait to read your blog.

[Reallyno in reply to 1998withStage4]

Thank you for posting, I keep telling my mother that there are women who can live a long time with mbc. Your post shows us all that

[Sebina in reply to 1998withStage4]

1998 you're a real hero sister. I read your blog 😘❤️

[Lovemylakie]

I was diagnosed March 26, 2015 with HER2+ breast cancer. Went through chemo, masectomy, reconstruction, radiation. March 2018 saw oncologist complaining of severe rib pain, he said I needed CT scan, well scan showed cancer metastasized to left lung, 3 tumors which had been growing undetected since original diagnosis. So in my mind I am almost at my 4 year mark. Also I had 6 chronic and acute cracked ribs that took a year to heal. Oncologist thinks the compression suite I was using for my lymphedema was the cause. Needless to say I was really upset with my team of doctors. I think about health/mortality daily. Definitely a head game. I hope I haven't upset you in any way, I am very open about my feelings.

[Tja1970]

I am not quite 5, but 3.5 and still doing well for the most part,. I have has some iron and vitamin deficiencies lately, but I have been getting infusions for that and feel ok, what I really feel helps is good old fashion sleep.