Hi everyone. I’m new to this forum I’ve definitely found good information so far. Just curious how long those of you who have MBC have had it. I’m coming up on 6 years.
Thanks
MBC : Hi everyone. I’m new to this... - SHARE Metastatic ...
MBC
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Normalee1965
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Coming up to 6 years . Luann
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Oh no! Well, welcome to the group. Big hug!
5 years and in remission ( NED ) my oncologist called it remission this last time . I didn’t want to correct him . 🌹❤️😂
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In my 4th year. Last PET/CT NEAD.
2 years for me.
Hi,I’m a relative newbie… coming up to 10 months since diagnosis ( De novo).
Not sure what meds your taking….but I hope your doing well and feeling good. Welcome onboard! Glad that you like our group of fab people!
Zoe x
2 years and 5 months for me.
5 and a half. At the start I never thought I'd make it this long! I'm still pretty healthy, working etc.
I am 5 1/2 years either. Good for you. No way could I have continued to work.
I must confess i have cut down to 3 days week and I struggled to do that when I was on fec-d chemo . Hope things ok financially- that's once of the most worrying things. Have a great day 😊
Thanks. Well, thanks to the great attorney and social worker at the cancer center I go to, I did a pooled trust fund which in NYS allows me not only to have medicare but also full NYC medicaid. It is a mass of paperwork (which the attorney primarily did) but NYC Medicaid also pays Medicare for me (I think now it is like $170 a month plus they pay my rx plan which is about $40 a month.) So I do not get that deducted.
I also get free car service to and from ALL doctor appointments, not just cancer-related. That is a blessing bc I do not drive (so no car expenses) and I have no family or even friends anymore that live in Brooklyn and it would take me a bus and two trains to get to the cancer center.
I never knew one even had to pay for Medicare. I had been on a NY special Medicaid (which is available for ONLY stage iv breast cancer, pancreatic and ovarian cancer) prior to being forced onto Medicare. I was shocked that one had to pay every month for Medicare and how little Medicare paid for anything. (They expected me to pay $2,000 a month towards my Verzenio!)
I do not pay a penny, not even co-payments for prescriptions and/or any tests they run, etc. I have no deductible. I am also single and do not own a home or condo. I don't know if women with stage iv are aware of this. I was blessed to have a cancer center that had a full resource center. Bc I would be homeless by now.
If you get SSDI, you should look into doing a pooled trust fund. The money they take out from my monthly SSDI is $1,680.00 a month. Its a non-profit and they only charge $20.00 a month and they use the rest to send my LL her rent (reoccurring payments) and I scan them my credit card bill and they use the rest to pay what I tell them to.
I do not own anything but even if you own a home and/or a car, you can get one. There are different types depending one's situation. Basically, you apply for Medicaid, NYC Medicaid will say I am $1,650 over the limit for a single person to get medicaid so that is the Spend down amount). Medicaid then approves the paperwork, and so they just base it on what I have left AFTER that amount is deducted by CDR. I do not think women are aware that this is available. So I realize how lucky I am to be able to do this. I have had a pooled trust now for four years and never once had an issue. If you have any questions, feel free to ask me. But you should look into it. Medicare is federal, each state has their own guidelines but all have this pooled trust option bc people with stage iv are eligible to do one.
Wow what a blessing! Hooray for such a helpful cancer centre. ♡ thanks for sharing info
I am coming up on 5 years. Welcome!
That’s great Normalee1965!! It would be good to also know what mets people started out with… x
11 months. Feeling great so far!
Thank you all so much for replying!I’ve been on Ibrance for over 4 years now. The side effects are eating my lunch though and have been for quite a while. We are going to try 2 weeks on and 2 weeks off. I was on anastrizole for 3 years but the side effects got to be too bad. I’m on letrizole since then. I’ve been stable for 3 years. Mets in spine. I think the only reason I feel bad is the medication. I’m 56.
I pray you all will remain as healthy as you can.
I’m at 10 years and hope to keep going. I’m still getting Faslodex, but my doctor Toledo me he has patients getting Faslodex for 30 years.
I've had breast cancer since 2018. A simple mastectomy, and they thought they got it all. 2 years later, it popped up in a lymph node by my clavicle. Then I started infusions for MBC.
3 years. Had one spot on my hip. Scleric since summer of 2019 and now NED!
Breast cancer 3 times since 2012 diagnosed MBC 2020 . Ibrance since then doing ok. Never let it affect me much since 2012 age 49,been all over the world in between ops never had a night in hospital yet including the masectomy and worked full time until last few months , going to look after my 2 year old grandson as well as part time work now. 60 next year doing ok. Breast cancer has always been part of my life, mother, grandmother, aunties all had it and none of them died of breast cancer, other things yes.
Mother still alive age 87. It’s always been in my life with all female family members on mothers side since I was small so I’ve seen the advancements too, openly talked about by all family and We all view it as it has to fit in with our life and aims as long as We are alive (as much as possible ) not the other way round. If it wasn’t Breast Cancer it would be some other medical issue at 60 I recon so I will take it and enjoy life to the full living with MBC.Have a lovely Easter Weekend
Debra xxx
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I Hi Debra,I do not know how to stay positive as you are. Mbc controls my life. I have anxiety and depression. I am on my 3rd year since the diagnosis. Changed five treatments and am on Xeloda now. I always hope for new treatments and cure. These treatments cause so many side effects.
Good luck
Marina
Hi MarinaI think you are doing great, you have worked through 3 years .
Yes different people different side effects and I really hope Xeloda works well for you. Everyday must seem like a challenge with a lot of change of treatments but there is also something positive as each day we wake up and are part of this world. Today it is my tulips opening and they are a deep purple and beautiful, I thought they were yellow so a lovely surprise today too. I hope you have a lovely Easter weekend and can relax and feel good. Not sure where you are in the world, I am in UK and it’s actually sunny today !!!
Hugs
Debra xxx😍
Thank you Debra for your positivity. I am in Florida, USA. It’s warm but rainy today. How is your mom doing at 87? Does she also have mbc?
HiMy mother does not have MBC, she had breast cancer at age 58 and had lumpectomy and lymph nodes removed and has been fine since. She goes walking in the Scottish highlands, so fit for 87.
My aunt had MBC she died of a heart attack age 69. My gran also died of a heart attack age 66 after breast cancer age 50.
When I traced my family tree I found so many females on my mothers side down the line died age 49.
That’s the age I was first diagnosed. When you think there was no treatment then , it can only get better with research .
Hope the rain stops soon , enjoy the warmth, it’s going to be 16 degrees in UK tomorrow, in the North too, I’m near Scotland, we very rarely get warmth but I live in a lovely little coastal town near the beach. Not brave enough to swim in the North Sea though.
Take care
Debra xxx
😍
Thank you for your reply. What a coincidence...I was also diagnosed with BC at the age of 49 I went through right breast mastectomy, chemo and radiation. It was a horror. Then I thought that I was healthy and was under shock when MBC was found as an accidental finding. Since that time my life has changed dramatically. I am 61 now a few months away from my 62nd birthday. I am always in fear. I try to go ahead with my live, working, spending time with friends but it bothers me all the time. I want to be cured which is not possible now.
Good luck.
Thank you for your reply and positivity.
Marina
I just celebrated 5 years this month. I was diagnosed de novo with bone Mets in April 2017. Ibrance and letrozole with zometa every 3 months. My worst side effect is joint pain in my hands. I had a thumb joint replacement last year which is still healing. I stay busy with grandchildren, walking, kayaking. I think it is important to stay positive and happy. Enjoy life everyday and help other people that have it worse than we do. There is no time left for depression. Let’s all live for the cure!
Hi Susan. You are so good. I am anxious and depressed. This disease controls my life. I think about it all the time. I am on my third year but changed five treatments. Pray and hope for cure
Best,
Marina
Marina, hang in there. Sending you daily hugs and prayers everyday for a cure.
Thank you so much Susan!!!
Marina, with your moniker for this website, I thought you must be strongly optimistic. Sorry you are depressed and in fear. I was recently in a discussion group of people with various types of Stage IV cancer, and someone who is doing really well asked how she can stop thinking about dying all day every day.
I tried to answer her because I am having the opposite experience in a way. I don't know if I can explain it. I looked back at something I wrote a year or two ago. I didn't remember that I was angry at myself, disappointed in life, depressed and afraid. Something changed in 2021. I am now pretty happy most of the time. Life delights me. With the time I have left, limited, I don't want to spend it anticipating oblivion. I want to milk it for everything I can. I am somehow liberated from regrets and plans and disappointment. I have decided to do things I enjoy almost all the time. I was working until March 31. Now I have a few little jobs, declined an offer of more work, and have been dedicating myself to -- fun, or just relaxing and taking it in. I have volunteered to help others who are swamped with work. -- But not in my field, because that is work again. I realize I am privileged in that I can afford to do this, past retirement age, and I feel well. I am exercising a lot, more than I had time for before, and those endorphins are very useful.
Is any of this helpful? This is my way, my route, yours may be different. I just bought a bike; a friend admonished me because of the risk of injury, which I cannot afford. She said "You wouldn't be able to do the things you love, having dinner out with friends," and she went on to name more things that she loves and I don't. So I don't want to do that to you. For me, it has involved taking chances, trying things that I might fail at but I enjoy, not fearing social judgment (and often failing!), but being free, what is there to lose.
Thank you Tammy for sharing your experience and for your positivity. Best
Marina
hi Chris. that was beautiful....thank you for sharing....very uplifting! i am not fearful (or not too much) but i am depressed and anxious. i miss exercising/dancing/activity....and i sure could use those endorphins. probably what i am missing most? maybe if i was more creative i could figure a way to make that happen?
so i am curious. what happened in 2021 that changed your outlook. did you 'make' it happen or did it just happen on it's own. did you consciously decide you were going to change your 'thinking habits' and come up with a plan? or did you just realize you felt different? i am struggling a bit and searching for some answers. if too personal, no reply totally fine!
btw...how is your mouth and the ONJ....having been thinking of you and wondering how the dental issues are progressing. hoping for 'goodish' news. (fingers crossed).
hugs...
carole xo
Carole, I feel like an insensitive idiot for some of the interim responses I wrote before I went back and read your first long post, and the update. Wow. I can't believe you lost your soulmate, etc., then pulled yourself together, then this. And you really cannot exercise.
Where are you in MA? Too bad you don't have real palliative care, there. I had a former colleague and neighbor who was diagnosed with bc at the same time I was, 13 years ago, and opted for only alternative and ineffective treatment. By the time I got mbc 3 years ago, she was in bad shape, but she had palliative care at the hospital, a special palliative doctor she saw often; he was good about pain and getting her other things she needed. She also had free home health aides. When she was in the hospital because her hip was crumbling and they wouldn't let her walk, they got her a light ball to bat around with her one good hand for exercise. They know these things.
Are you sure you cannot get Medicaid? I was trying to get my mother on it because we had spent $500,000 on aides over 3 years. We had to transfer some property into a trust, and her substantial but greatly diminished investment money into a trust, and her social security was going to be drawn down to pay for aides and other care. (This was in NY. I paid a lawyer a lot to set this up. It was going to take three months after the transfer of assets for the benefits to kick in, but she died first and I just had a legal bill.) My friend who was in pain and in a wheelchair went into a nursing home, for a while. It is actually quite a nice one, unusual. (She started taking Ibrance and is walking again.)
Your situation sounds too hard. -- At least you have a helpful roommate! I have one and offered her reduced rent if she would help. No. I have twice crashed and needed help getting to the hospital and had to call a friend, even though she was right down the hall.
You asked how I turned around. I really am not sure. I think I would have been down without cancer when I was down. I have no family left, no kids, no grandchildren -- all my friends are entranced with grandchildren. Sometimes I am really sorry for myself that I have no kids or other close relatives to take care of me, or even care, at the end, and no children to love (and not even a dog!) -- but most of the time I have stopped thinking about that. I guess death seems closer and whatever is going to happen will happen.
I pretty sure, too, it is the dance classes I started taking. In person, outside, during the pandemic. -- Like you, I always did a little this and that - ballet and I wasn't good at it, aerobics and I was, running, pretty good. In this class, I shone. I don't know. I think I am just all out, present. I fell in love with this one program, with the head of it, the other teachers. I began to look and feel better than I had in years. My friends like me better because I have had this personality change.
So that is not helpful to you. You know this route, and it is closed to you. It seems like you are getting help now, and your helpers want to help, but where to find joy....Anything creative? Can you try sketching and painting? Remember the movie "My Left Foot?" -- Something to get out of your body, outside yourself that draws you in...gives some satisfaction, something of your creation that you can admire. Dying eggs! Maybe you did that.
I will keep thinking about it, but I need to know more about what you can do, without pain. Chair yoga is out. We do hand exercises. They are pretty. Interesting what you can do with just your hands, as a form of dance....
You apologized for a long post. This is voluminous.
Chris...thanks for all that. sincerely. i love flowers and was thinking if i could do some outside planting with a very low chair. but no go, i have to keep bending over to reach the ground and way too painful after the first minute. done. i'm really not a crafty type at all. knitting isn't out of the question. i can't read at the moment, can't concentrate....meaning a book. but maybe that will improve over time. it is very forward thinking of you to be looking at what you may do next...photography...i'm thinking that is a long way off, but smart to think ahead. wonderful you feel great and happy right now. and good on your part that you have accepted where you are in your life. (you still could get a dog! i am thinking of it....just a tiny one. my therapist actually recommended)
no, i really don't qualify for medicaid. i have some savings and a car and that immediately bumps you out. your roommate is a not a nice person btw! i can't believe no ride to the hospital?? seriously?
and from what you are telling me, homecare is even more expensive than i thought. wow. my roommate better stick around. maybe offer rent-free...lol.
oh and please do not apologize. i don't read all posts everyday. although i am on here a lot lately... keeps me sane. and yes, makes me feel engaged. (like that word)
will be thinking of you (and your teeth/jaw)
sending hugs.....
carole💛🌷
Jeez. just a car and some savings disqualifies you? Now I understand why I had to pay a lawyer so much to get my mother on Medicaid. I guess you would have to transfer title of your car to someone. You aren't driving, are you? And put your savings in a trust administered by your sister, perhaps. But you know the possibilities so I should drop it. -- I learned about it when I was in the ER, having passed out for the second time because I was so depleted taking care of my mother. A nurse came along and gave me the names of lawyers who could help with it, even though my mother had property (a beach on Martha's Vineyard that I now own) and a few hundred thousand.
Flowers are great! I belong to a community garden in NYC. I have tulips and daffs that I picked Sunday on my kitchen counter and they lift me up. On Martha's Vineyard, I look out the kitchen window and see my handiwork -- or I used to, for forty years. I now own the house with my nieces and they hired a gardener who uses all my good soil and plants just a facade and kills everything I plant. What she does is very showy, but it isn't my work so it is not the same.
When some people at the community garden rebuilt my box - 10 feet by 5 feet approx -- a couple of weeks ago, they put two by fours in the corners. Why? They explained that when I can't bend, they can bring the box up, so it is sitting height.
That is what you need: a box. Planting, getting hands in dirt, and then enjoying the fragrance and beauty is so rewarding. Is there any way someone can build one for you? Money again. It doesn't take much in supplies: boards and screws, but wood is expensive these days. You would need a lot of soil, too. I think a GoFundMe might work for this! I don't know how that works, but I would be willing to do it. My feckless roommate knows. Maybe she could do something useful since she is short on rent. Would have to pm you to get the info.
Now I will read your second reply, and maybe not go on so long. I actually should be doing something else.
Chris....you are so sweet and so helpful....thank you for that. and thank you for your time.i will try to keep this brief. i moved from an apartment bldg into a house that i rent back in December. the house is owned by my older sister and her husband and i pay reduced (but enough to cover their investment) rent. during Covid....i was stuck in that 5th floor apartment, with NO green space, for two years. it was suffocating to be 'stuck' inside. now i have a 'cool' backyard with an apple tree, and two pear trees and lots of wild flowers. and very private. there are several 'empty' flower beds. and a small greenhouse with counter space....yay! i could but a high top chair into the greenhouse and do some 'planting'......starter plants and herbs....get my hands dirty like you said!
yesterday i spoke with other sister (who lives close by) and she is recently retired and now a 'golf widow'...lol... and said she has plenty of time to help me fill the beds. my design but her muscle power! before soulmate ditched me, i had beautiful pool area....landscaped with carpet roses, day lilies, gorgeous black eyed susans, sea grass etc and i loved maintaining....my design. it was like a little oasis. so this rental house also has a cute little covered patio where i can sit out and enjoy the scenery.
your input from your last note got me started on thinking about this. this could be a fun and creative spring/summer project! i need to get out of my bedroom. so no GoFundMe necessary but thanks so much for offering....you are amazing. and thank you for helping me to think of this. you're are so kind. and so wonderful for you to now have that second home on Martha's Vineyard...such a beautiful and peaceful little island. i am happy for you.
thanks again Chris🌷🌻🌾🌸🌺
many hugs.....
carole 💛🌷💛
That sounds amazing, your pool area with rudebeckia, sea grass, day lilies. Sounds like a mix of two things I had. My mother's house was just half an hour from my apartment in the city. Big pool. half acre with garden around the perimeter. I swam and swam, and sneaked in herbs and tomatoes (my mother did flowers exclusively). I lived there for five years -- 3 taking care of her, and 2 fixing the house and selling it. Then back to the city. I didn't realize how much I counted on the house just to be out in grass and trees. I thought it was just the pool I would miss.
The place we really gardened was the house on Martha's Vineyard. My mother put in the garden from scratch. We composted and built up the soil. I lived there year round a couple of years. We had a flower garden in front, and a veg and berry garden in back. We worked on the garden and the grounds and stopped acting like summer people on vacation, just laborers. Loved it.
When my father died, my mother was encouraged to put the place in trust to my nieces with life time rights to my brother and me. As soon as the trust ended, my brother took over. My mother stopped going. It broke her heart. I tried to keep my hand in, but my brother died before my mother and his widow (not an owner) and my nieces took over. I got so little time it was hard to keep the garden going. -- Cutting to the present. A few years ago, they hired a gardener who does splashy facades of a garden, a narrow strip of very tall plants. I see them all over the island. It is not a real garden. I had kept the back, did my vegetables and native plants, but this woman took it over, the very best soil, that I had built up with compost. Killed my veg and planted grass! And a really ugly showy bush/tree. Every time I clear a space, set up a soaker hose, she removes my hose and kills my plants. I keep moving back. I try to tuck in a few plants with hers. She edges everything, even wild lilies, way out with a foot of space, soil, and her dging keeps growing, shrinking the yard.
I finally consulted a lawyer after my mother died and learned that I was and am half owner. I could have kept my mother in part control. I could have spared her that loss. Now it is too late for me to jump back in. They run it and control everything and pay for everything.
Every time I go up, I say to myself, don't freak out. They have done what they are going to do. And every time there is something worse, and I rage for a few days.
I decided to plant trees in memory of my mother, brother and me. There is already one for my father. No one sees to them at all when I am not there. I don't think they will survive.
So so much for "now" having that second home on Martha's Vineyard. I had it for 40 years. I lost it, basically. I still go and try to enjoy it. It is the only long term home I have, but my sister in law and her boyfriend take it for the best times. It belonged to our family, not hers. She has never understood the place (mocked my brother for composting), and has duded it up like Martha Stewart and just spends money like crazy. The house is ringed by champagne hydrangeas, too big, wrong color, and they replace all the flowers we had for bees and butterflies. You got me started!!!
mostly just thank you for 'getting it'. xo
Closing in on 4 years. I'll be 76 in June. MBC (spine met) was my birthday present in 2018. 75 was my original goal, now think I'll update it to 80.
Hey neighbor, I am in Alabama but from TN. I am 69 at 5 years since diagnosis. Sending hugs to you.
It was my birthday present as well in June of 2019, 9 years after bc. It was a shock and still is. I am 61. I am very anxious and depressed and lost a joy of life. It helps so much to read your uplifting posts
So happy to read these posts they give so much hope. I’m DeNovo since January 2022. No idea what to expect or how to cope some days. Tumor markers went down from 131 to 75. So I should feel ok, but with Lobular you never know.
Welcome to the group 😁. I was diagnosed with bc and mbc at the same time 1 yr ago. Yeah me lol. My first line ibrance/letrozole lasted 11 mths with bone tumors healing. Now on second line fluvestrant/letrozole still working at stabilizing the liver 🙏.Deb
Hi there, I've had secondary breast cancer for 14 yrs, breast, skull, liver & abdominal lining. Been on various meds & treatment, no active cancer at present. On Faslodex & ibrance.
Hi. 14 years is amazing. Please share your treatments. Thanks,Marina
Hi there, In 2008 i was diagnosed with sbc, I had mets in lymph nodes, skull, liver & abdominal lining. I've been on FEC, Tamoxifen, Letrozole, Capecetabine & now Ibrance & Faslodex. I've had a lumpectomy & RFA 3 times. Hope this helps?
Hi,Thanks a lot for sharing. What is FEC and RFA?
Best,
Marina
Hi there,
FEC is a combination of IV chemo & RFA is radio frequency ablation where the tumours are burnt off.
Thank you very much
just wanted to mention that RFA can also be done to 'burn/destroy' nerves from your spine that are causing pain.....carole xo
Thank you. Can it destroy bone Mets?
good question. but i don't know the answer. it sounds like Mamacass67 might know the answer....it sounds like maybe she had that done?? not sure....hmmmm?
Thanks
I had RFA to liver tumours.
6 years! I only hope to get that far. I will be 2 years in July. I feel like I did prior to diagnosis-my normal self. ER/PR+, HER2-. Mets to bones and 1 tiny little liver met-6 mm x 8 mm which will be Cyberknifed.
Almost 3 years, on second line of treatment with lung mets. It’s a day by day fight!
7 years
5 years this July.
2.5 years on Ibrance and examestane.
27 months!
Good morning, I was diagnosed in November 2008 with left breast cancer that had spread to lymph nodes . I did treatment TAC then Tamoxifen. Cancer returned August 2017 large 12 cm tumor in my liver and Mets on bones. I had TC Chemo then Ibrance/Letrozole for 3 1/2 years. Tumor died and liver is recovering well. Second liver tumor appeared 9 months ago 2cm in liver. I had radiation and now on Faslodex/ Anastrozole. All seems ok my next PET is scheduled for June. Dealing with MBC for 13 years now. I’m almost 60 feeling pretty good most days.
A bit over five years.
approaching 7 seven years. bc mets to right pleura and pluerodesis dx in July 2015. still on first line of treatment. NEAD since March 2016. may each one of us celebrate each day!
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