Hello all. I am new to the site. I have been searching for a MBC-specific group to join since our situation is vastly different than many others. I went through my initial Breast Cancer starting in 2012. Stage 3. Chemo, radiation, bilateral mastectomy, reconstruction. All was well until October 2019. I had a spinal compression fracture and from there was diagnosed with MBC. No organs involved. All in the bone. Had spinal fusion and then radiation on spine, hip and shoulder. Radiation caused hip fracture so I got a partial hip replacement. Started on Ibrance and fulvestrant a year ago this month. Its going well so far. Scans show no progression and my Cancer Antigen went from 500 in November 2019 to around 35 where it hovers now. So, that's a brief snapshot of my journey. I am married for 31 years and we have 3 daughters...22, 19 and 17. The are a tough crew and are my rocks. Looking forward to meeting all you amazing warrior women!!
Greetings: Hello all. I am new to the... - SHARE Metastatic ...
Greetings
Hi, Andi!I hope you find this group as inspirational as I have. I was diagnosed with MBC a little over three years ago; and these wonderful women have provided knowledge, encouragement, and the empathy that only fellow cancer warriors can truly share. God bless you on this journey!
💗💗🙏🏻🙏🏻
Linda
Welcome Andibo this is a great site! Everyone is so open and honest with help and their feelings. It's so refreshing knowing you can count on them to be up front on what to expect. As you will find by reading here everyone does seem to react differently to all treatments. So just because someone has a side affect doesn't mean you will. And just because something worked for someone doesn't mean it will work for you. What's great is as you go through all the posts you at least realize you are not the only one experiencing a certain feeling or side affect . You also gain insight on what is not normal and that you need to let your doctor know . This is a great bunch of people who will encourage you and help you anyway they can!
I think just finding people who can relate to this disease means all the difference to me. While my husband, daughters and friends are right here next to me supporting and helping me in every way, they still cannot understand exactly how it feels to live with this disease every day.
I totally understand ! I will be married 36 years this June. My children are 35, 34, and 32. My husband children sisters and friends are all very supportive but there are just things I won't say around them or bring up. My Husband gets to anxious and stresses more then I do . So this is where I can talk freely.
I find that when I try to explain the reality of my situation, sometimes friends get "that look" on their face! I do not and will not be defined by my situation so I try not to talk much to them about it. My husband is amazing but I don't want him to get overly stressed all the time either. I am loving this group so far.
Hello and welcome. I was diagnosed with MBC 3 years ago after 2 reoccurences. Praying for you on this journey!
Thank you......I am so happy to have found this site.
Welcome here. You have found a great site for info and support. I was diagnosed in 2013 but I know I have had Cancer 3 years earlier than that. A lump in my left breast was ignored by the Mammogram doctor and didn't get diagnosed until it had moved to my left hip after I fell and bruised it. Then late 2019 breast tumour started to grow and broke through the skin so had the breast removed Jan 3rd, 2020. I already had small nodules forming in the lung and they have continued to slowly grow. Trying to find the best meds to take now as I had an increase on Ibrance. Just had a terrible reaction to Xeloda. Not a very positive post for you. Wishing you all the best.
Cheer, June S.
Hi there and welcome. This a great site for sharing and support. We have all made some great friends here, with us being on different stages of our journeys, and scattered all over the world.Where do you live? I am one of the UK members.
Clare x
I live in Cary, NC. It is right smack dab in the middle of the triangle of Raleigh, Durham and Chapel Hill. I grew up in the DC area...went to school in upstate NY, moved back to DC for 5 years and then we moved here 25 years ago. Where in the UK are you located?
Sounds like you have lived in some great spots. NY is definitely on my bucket list - as well as loads more places.I live in North Wales on an Island called Anglesey.
Clare x
I lived in Arlington VA in a house with 3 women in the mid 80’s. We had a lot of fun in DC. I still visit friends. It’s one of my first destinations when I get my vaccine.
I love the DC area. grew up in Bethesda, MD. Moved back and lived in NE DC for a dew years after college and then moved out to Rockville, MD. While I loved it, I absolutely adore NC. Great place to raise kids and the prices are sure a lot better than DC. So is the traffic!
Agree about DC traffic. It shouldn’t surprise me any more but it still does when I visit. Of course I lived there in the 80’s when there was only one Tysons Corner!
I remember my mother would visit from Boston. Our rental house was about 4 miles south of Fort Myer down Route 50. She would comment on how much the area had developed since she visited when she was in her 20’s.
So you see, many of us do end up sounding like our mother!
Up nearer you in MD, I used to love Armands Deep Dish pizza on Wisconsin Ave.
Long gone. Last time I visited a few years ago, I swore they had not cleaned the rest rooms since I lived in the area in the 80’s! 😀🍕
Armands! YUM! We used to eat there a lot growing up and also when my Hubby and I moved back in 1986.
Hi Andibo! Welcome to the site. I am in NC as well...on the coast between Wilmington and Myrtle Beach. I am originally from NoVA, retiring to the beach 3 1/2 yrs. ago. Diagnosed w/MBC in Dec last year. Drive to Duke for my treatment. Do you go to Duke?
Hi Andi,
It's good to meet you! Welcome to this site. I agree that having metastatic breast cancer is vastly different to early stage disease. I don't feel that it's appropriate to join this group if you are early stage and do not have metastatic breast cancer. That's why I love this site, as I can relate to other women in the same situation as me. So you have come to the right place.
Take care,
Sophie
Hi Andibo,Welcome! I have found this site to be awesome for getting support and sharing experiences and tips. The lovely group of ladies here will offer sympathy, encouragement and often also laughs. Glad you found us.
Jackie
Me too Jackie!!!
Hello and welcome. I joined this forum following an MBC diagnosis in april, previously hung around on the breast cancer haven board.Thank you for sharing your journey so far, great to see you have your 'rocks' for support, makes all the difference I am finding.
Hope you find this board as helpful and friendly as I do.
Caroline.
Welcome Andi from the Pacific Northwest. I’ve had MBC for three years now and find this group to be especially helpful and accepting. Whether you are feeling up or down, the group is helpful. Got questions, there are usually answers. Whatever you decide about treatment, we accept...it is an individual journey for each of us but there is usually someone here on the same path. I hope you get the same benefit from this board that I do. Elaine
Welcome on here and I hope you get answers to your questions and support from the lovely ladies on here . I am in the U.K. , 57 , married 31 years this year and have a 22 year old daughter.
I had a right mastectomy/reconstruction with implant /right axillary clearance November 2017 after a routine mammogram . 16 out of the 18 nodes removed were found to be positive and tumours totalling 10.5cm , which resulted in ct/bone scans and my de novo diagnosis , bone mets only . I haven’t had chemo or radiotherapy ... I was put straight onto Ibrance 125mg /Letrozole Dec 2017 and have done well on it so far .
I am glad that you are getting good results from this combo and I hope it continues for a long time ! Take care! x
Welcome Andi ! This is a wonderful group of women that are always there to inspire, support and provide our own experiences as we move through this journey. I'm 56, a mother of 4 children in their 20's who was diagnosed in 2020 of MBC - thankfully in the pleural sak outside the lungs. I originally had Stage 2 BC in 2019 with a lumpectomy and it came back at the exact same spot. Know that we're all here to support each other always ! I'm in Arizona.Blessings !
Julia
How are your kids doing with it all? WHen I was initially diagnosed in 2012 with BC, my girls were so young. My middle daughter, who is now 19, went through anorexia when she was 16 and 17. Through therapy, we learned the core cause of it was that she felt she had no control over anything in that situation back then. She is doing great today but my family has just been through such hell, as all our families have. My girls have circled the wagons around me since my MBC diagnosis and it has brought us all so close but I constantly worry and think about the what ifs and the what I will be missing down the line moments. I have to push those thoughts aside because they are just such negative and damaging thoughts. I attribute a lot of my survival through the years to positive attitude and energy and having a sense of humor that will get me through. Now I feel like I am just rambling but I am just curious how your kids are doing?
Hi there ! I too have an extremely positive attitude and energy and have also been accused of a raucous sense of humor. That's the majority of the battle 
In my case, I've probably spent more angst calibrating my children than myself. You see, I lost my first husband in 2009 when my two children at the time were 12 (Katie) and 10 (Carson). He passed away of a combo pack of AML (Acute Myleoptic Leukemia) and PML (Pre Leukemia) in less than 3 months despite a bone marrow transplant we lost him in May 2009. My children and I were devastated. At that time I was an executive at Taser. Got remarried in 2015. That is where my two stepsons came into play. Now I have my son Carson 21, Katie 23, Steven 26 and Kevin 24. When I got the Stage 2 diagnostic and went through the lumpectomy, chemo, radiation, full lymph node extraction in 2019 my children rallied around me and I truly SAILED through the process. Getting hit with MBC last year rattled me significantly. Everyone thinks its a death sentence. I don't see it that way. Dealing with MBC is like a person who deals with Diabetes. You need to manage it. Sure, I have my bouts of doubts but I promised my kids I'm not going anywhere anytime soon. I have too many years of grief to give them ! xoxo To me, I don't mope . Instead of why cancer, it's why not. Ok. Game on ! (sorry ex Olympic swimmer here) Most of it is in the mind, your faith, your network and your attitude. And of course all the drugs and supplements I'm taking. When I use the restroom, I swear I'm planting a vegetable garden - lol. Must admit though. Having a heck of a time weaning off my vodka tonic at night. Meh.
Oh man do I like you! You sound like me! I always tell my kids I have lots of years of tormenting them left in me! My doctor says that it is true too so that is how I choose to proceed. I am so sorry about your late husband. You have been through hell and back and it is a true testament to your strength that you are positive like you are. I love your sense of humor. My friends always tell me they love the fact I have no filter! At this point, being 57 and going through what I have, I don't feel the need to necessarily pussyfoot around things. One thing I will say about going through extreme adversity is that you just don't sweat the small stuff anymore. My girls and my husband say I am much more laid back than I used to be. Helps with stress too to just let go of stuff that does not matter! What part of Arizona are you in?
(((( HUGS ))))) Are you my twin sister LOL. I live in Scottsdale Arizona and will be turning 57 on Feb 15th. Yep, that's right. Missed Valentines Day Feb 14 by 5 minutes. I was born 5 minutes into the 15th at 12:05 am. My mother still remembers I was the only baby in the ward that did not turn out to be a valentines baby. I blame it on my mother. She was wolfing down chocolates, she could have used a bathroom plunger but nooooo..... so with the infusion of chocolates, I was a tad lazy exiting the chocolate covered placenta LOL !. Feel free to reach out to me anytime 6026259958 ! xo
Maybe we are twins! After this damn virus gets under control, we are going to be making a trip to Scottsdale Area. Some of our best friends just moved to MESA, my amazing sister in law and her husband live in Scottsdale and so does my best childhood friend. When we come, we need to meet up for lunch (with cocktails preferably!) Such a gorgeous area. I have been to the area a couple times in the past.
You have a new bestie in AZ ! ME ! Where abouts do you live? Mesa is a hop skip and a jump. Obviously I'm partial to Scottsdale - been here since 1992 from California. Thank goodness I left that cray cray state ! xo !
I live in Cary, NC. It's about 10 minutes outside of Raleigh. We are smack dab in the middle of what is called Research Triangle....Raleigh, Durham, Chapel Hill. I have a 22 year old daughter who lives in Charlotte and graduated this past May from UNC. My 19 year old daughter is a sophmore at College of Charleston in Charleston, SC and my 17 year old daughter is a junior in High School . My husband and I own a small advertising agency.
Fantastic ! I used to travel to Cary, NC the Research Triangle when I worked for IBM. I finally decided to step down from Corporate America even though I still consult. Filed for Social Security Disability which you can do with MBC ! Check into it. They will pay you as if you retired at 67. Sweet ! Better yet, you can still work. The biggest deal for me and my hubby is that after 2 years I'm eligible for Medicare so we don't have to pay the OUTRAGEOUS medical insurance. My husband is a founder in a small business and most of them have medical through their spouses. Since this hit me, I obviously am not working since October of last year so we're free-balling it on the open market so to speak ! LOL !
I'm on LinkedIn linkedin.com/in/juliabode/
I had to laugh at your birth date and time. My father was born 5 minutes after midnight also . Had he been born 5 minutes earlier he would have been Valentine .Instead he was Thomas!😊
Oh my goodness ! That is beyond coincidental. I was going to be the first baby girl and mom was determined to name me Valentina ! Ha. Well that didn't go so well. I got named Julia Adele (my mom's name is Adele ). She did say she was hedging toward Quincia had I come later. WHAT ? !!!! Bleech !!! She said Quincy was a favorite name of hers after a spy show. I'm gosh darn tootin glad I came 5 minutes into the 15th and split the possible names: If born on Feb 14 - Valentina ; Born on Feb 15 - Julia, Born Later - Quincia. Like I said, my mom had too much chocolate before and after delivery. So I'm just Julia. Though my mom and family call me JULIE. What the heck ! LOLOL
P.S. (I'm still laughing), can you imagine being named Valentina? Everyone would call me Val. Ick ! "Hi, I'm your pal Val" <=== I see a Val as a blue haired grandmother in a dress made of curtain fabric. YUK !!!! LOLOL
Snap.... 3 daughters, married 31 years and have MBC... I’m on Ibrance, letrozole and zoladex, one year on from initial diagnosis and following recent scan - news is I’m stable with some shrinkage. I feel good, I’m a bit heavier than I’d like to be, aches and pains but hey ho... it is what it is! After 8months off work, I’m back and love the normality it gives me.... long may that continue!I too am so grateful to this forum, family great - but not the same! The knowledge, the positivity and experience is just amazing!
N x
Sounds like great news...shrinkage! That is a word that takes on whole new meaning from what most people think it is!😂 I have gained so much since my initial diagnosis back in 2012 through Tamoxifen. I think I have put on 40 pounds since then, Drives me nuts. I lost some when I was going through my spine fusion and hip replacement stage but have put it back on since being on IBRANCE. Ugh .
I love the energy of your post and Ditto on this end !
Welcome, Andibo! I was diagnosed with Paget's (nipple cancer) disease about 3 years ago, when I was 71, which led to diagnosis of DCIS(Ductal Cancer in Situ), which is Stage 0, but generalized throughout my right breast, which led to a simple mastectomy. No cancer in 5 Sentinel lymph nodes, so they thought the cancer had not spread. They were wrong.
Just as in the original diagnosis, routine screening didn't show anything. Two years later, I went to my Internist because of rib pain. At the time, I had a mild sore throat, so she checked my lymph nodes and one was enlarged! Biopsy led to diagnosis of MBC. Pain in ribs due to spinal compression, which could have been cancer or simply degeneration from Osteopenia. Can't be sure without testing, and since I needed chemo for MBC, the oncologist figured that would take care of anything in my spine, too. I had 12 weekly infusions with Taxol (Paclitaxel) and every 3 weeks with Perjeta (Pertuzumab) and Herceptin (Trastuzumab) indefinitely. Scans show lymph node cancer inflammation has cleared up. Inflammation due to crushed vertebrae has not increased, since the damage to the nerve is permanent. It is not bad enough to warrant surgery, but I need to be be careful about BLT(bending, lifting, and twisting). No radiation as long as back injury does not show signs of cancer.
I am so sorry you have had to go through all of this. I hope you are not in pain in your spine. I had never felt such excrutiating pain as I did with the spinal compression fracture and the hip fracture. Brutal. While the fusion has left me stiff in the spine, I will take it over the other pain. Hang in there. I am praying for you.
Welcome. The members are supportive, insightful, funny, and empathetic. We all think MBC sucks and are here for each other.
It’s a good forum for questions, updates and rants
I'm already discovering how great all you ladies are. 😘
Welcome Andibo! You are in the right place to share & be yourself with us fellow MBC’ers from around the world. I live in sunny Florida half the year and the cooler NC mountains in the summer months. You can check out each of our profiles to learn more about us. All the best ❤️🙏❤️
Nothing like the mountains in the summer! Where in NC do you live in the summer?
Welcome, Andibo! This is an amazing group of really strong, knowledgeable, and helpful folks. I'm so thankful that Ibrance and fulvestrant are working for you. This is a marathon, not a sprint, so hopefully you can breathe, enjoy every day, and focus on your healing. If your cancer ever starts to outwit your current treatment regimen there are plenty more options out there and more being integrated all the time. Having trust in your oncologist is paramount, at least for me, and being comfortable asking hard questions and doing the research. But everyone is different. One of my best friends won't research because she says she trusts her medical team. Me? I wish I'd paid more attention in high school and science college classes; I want to know as much as I can.
I live in northeast Maryland on the Chesapeake Bay and receive treatment at MD Anderson in Camden, NJ.
You sound like me...I am an incessant researcher. I'm fortunate too because I love my oncologist. So while I trust her, I always am questioning and researching! The area you are in is go gorgeous. Best of luck in your continued journey. Hope to chat with you often.
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