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Life expectancy

How long have you been living with MBC?

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Good morning, I was diagnosed with MBC April of 2018. My cancer had already metastasized when first diagnosed in March of 2015. It just wasn't diagnosed because they never did any follow up testing. They only found it because I was having severe rib pain so they did a CT scan to see why I had the pain. Not only did scan show I have 3 tumors in left lung but I had 6-7 cracked ribs. So in answer to your question I am almost at 4 years. Only started treatment for MBC 10 months ago. I was on letrozole only for 2 1/2 years and now on Ibrance with faslodex injections monthly. Tumors are stable so far. Get another scan in March. How long for you? I feel like I am playing the waiting game and it drives me crazy. I think about this every day. My regards to you.

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I had my original BC in 2008 - finished treatment Feb 2009. I noticed changes in Dec 2016 but because my actual case is so rare (mets only to the peritoneal cavity) nobody figured out what it was till I was so full of ascites (Peritoneal effusion) that I went to er with trouble breathing July 5 2017. They told me the cancer was back about a month later but could not find it for another month, when I had my first pet-scan. I was then misdiagnosed with triple neg. I went to live with my sister because they said I had no time left and because she lived in fla and I lived in Pa I switched drs new doctor ran own tests and said it’s not triple neg. It is hr+ her- I am currently on Ibrance and just switched to faslodex.

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Mine is also in the peritoneum. There are so few of us.

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In the peritoneum only? If so how long have you been struggling with this? Have you had ascites? What treatments have you had - you are the first person I’ve ever found like me if just in peritoneal cavity.

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Yep

Me too! First stage 3, also in lymph’s, in 1998. Did 6 months in chemo/ 5.5 weeks radiation/ 5 years tamoxifen/ /4 years letrozole. Then 10 years remission. Fall of 2017 diagnosed with pleural effusion metastatic. Started Ibrance and letrozole jan2018. No evidence of disease in 6/18 and still NEDthis month. Screw how long they say you can live!! That’s nonsense. We all

Get hooked into this prognosis thing but should not! I am 69 in a week and feeling really well. Only God knows when he is going to take me. So I fight to eat well for cancer, laugh each day, be kind to others and think good health. I listen to docs when it feels right, etc. and I continue to live my life with gusto as long as I may have.

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Another thing my onc said is that eventually Ibrance will stop working. And when it does we go to a plan b drug. So stop thinking this is the end because it is not. May have been years ago, but not now.

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No pleural effusion to date. There was a small study in Italy concerning Hipec treatment for woman with Hr pos Her neg woman with mets only in peritoneal cavity. Where the woman were actually cured and one had been 10 years and was still disease free. I am looking to possibly get Hipec while my mets are only in the one place. Looking for other women who may have had Hipec.

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Canyou get me more info on this Hipec? I know nothing to date about that. But, I fully believe we can be in remission, NED, for a long long time and I don't think its about the drugs

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Hi there. I posted a few studies to someone earlier last week around this and it certainly is showing great promise.

Sandra

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I will share what info I find out. I am going to see a dr in Buffalo about having Hipec

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I love you!!! Your words just made my day!!!

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Right on girl! I am 76 years old and am doing well on Ibrance, Fluexatine and Xgeva! I keep going and I pray often so I normally feel good. I have a few complaints, but no big deal! God's plan is perfect, so I'm going with that! There no guarantee how or when ANY of us are going to die! So what I say is "get busy living, or get busy dying". I'm grateful for EVERY day and am living my life fully! I grab a nap most days, have a couple glasses of wine before dinner and enjoy my friends and family and that all I can do! God is good and there's great research going on now, so we are lucky at this point to have good options! I admire all of the woman that have faced this ugly disease and chose to live the life they have! Have a great day! Kathy from Syracuse

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I love it when others here are older than I am!!! Still kicken!!!

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Ps am 53 and currently near Syracuse NY

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Where are you close to Syracuse, New York?

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I am just outside Geneva, NY

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I found out September 28, 2018 I had breast cancer. On November 12, 2018 I found out it had metastasized. My doctor is telling me years for life expectancy. Don’t dwell on how long just fight everyday and live everyday. Blessings to you.

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Amen Happy Valentines Day to you, and your loved ones.

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Almost 5 years. Diagnosed Summer 2014, my annum horibilis,, to quote the Queen. Mets to lungs. On Ibrance and faslodex. Was on letrozole, some progression of existing nodules. Scans next week. Ugh.

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Hi Nancy. Have you been on Ibrance for 5 years? If so that's wonderful to hear. I will definitely have you in my thoughts this coming week as I know how stressful it is waiting for the scan results. Stay positive and update us when you can. Take care.

Sandra

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I have been on it almost 4. Thanks for the good wishes. I thought I had this prescan angst beat but I am a little on edge.

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Do you still get copay assistance? I was told only two years of copay assistance for IBRANCE and then I’ll have a 2000 plus a month co-pay!

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I have corporate bc/bs and pay nothing. That is why I can’t stop working. I’d complain, but if it is working, I’m thrilled and will keep working too.

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Wonderful. I'm so happy for you. I'm sending the magic wand across the screen to remove that angst. Take a deep breath, meditate and stay positive. You are stronger than this force. Fingers crossed.

Sandra

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Oh please remember to tell us your scan results! I am hopeful to hear how well faslodex is working for you! Prayers you have excellent news from scans!

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Thanks, have-faith. I will. Almost 6 mos on faslodex. Hope it’s working. Besides the inconvenience and discomfort of the shots, I feel so much better on it than letrozole. 🙏

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Did the letrozole make you achey or stiff? I felt this way on letrozole and do now, but maybe less. Hard to tell what causes what. I try to stretch alot. Yes. The faslodex shot hurts. Last month when I got the shot I told the nurse I would go home and sit on a heating pad. She gave me two little temporary hot pads to stick in my panties. Of all days I wore seamless undies so I had to walk at a snail's pace to port authority so that they didn't fall out of my pants! Monday I get my next shot. It will be my third month. Good luck with your results.

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Haha, I can picture it!!! Does the indignity of this disease ever stop???? Yes letrozole made me achey and stiff. Rather have bruises on my a$$. 😭

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Maybe you should ask the nurse for the little heating packs, but make sure you have the right undies on!

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With my luck they will fall out in Lexington Avenue for all to see. And you know what, at this point I’d just keep walking🕺

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Oh that is funny. I think I would keep walking too and hope nobody noticed!

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Prayers to you for a good scan next week. Thinking of you and hoping for many years of good ones! Love, Marianne

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I started with MBC we believe in the fall of 2016. There was never a lump or tumor found. I started with what we thought was my asthma acting up. That year we sold our home and in a temporary rental in Winchester, VA until our new home would be done in the summer. We blamed the asthma on the 150 year old home we rented. One night my husband called 911 when I passed out due to lack of oxygen. The hospital did breathing treatments, gave me oxygen and did X-rays. I was told there was inflammation and possible a slight infection. They send me home with antibiotics and told me to follow up with the primary care doc. By the spring, I had a few more trips to urgent care and the primary for breathing treatments. It became so bad, I could not walk up a flight of stairs without stopping every few steps. Finally, when I could not even work out which killed me because I used to bodybuilding and lived for the gym, I went back to the primary care and saw her new PA. The new PA decided to look at all my records while I was having a breathing treatment. When she came in and we talked she asked me if I knew I have a moderate plural effusion when I was in the ER a couple of months ago. I told her I had no idea what that was and told I had some inflammation only. Luckily she told me I needed to have a repeat X-ray and since it showed the PE was still there, I needed to see a pulmonologist. He was not my favorite person, but knew my BC from 20 years ago was back (I was in my early 30s and had triple negative stage II BC). After thoracic surgery after my left lung collapse, and a positive for MBC from the cells in the fluid, I started Ibrance and letrozole. Long story short, I feel great! Working, gym, furniture painting, daughter getting married and madly in love still with my husband of 11 years. I am taking what my doctor told me and going to live many years with MBC. No one lives forever and when it is my time, it will be my time. Live and enjoy your life Becca! Sweetheart, try really hard not to focus on the crappy disease. Never let illness control your life, I don't! I look at life as a gift especially since almost dying from Crohn's Disease at 15. You've got this!!!!

Steph

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Amazing story. Love your philosophy on dealing w this.

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Yes, that’s a great attitude. My original BC was in 2001 then it came into the other boob in 2013 and started Mets in bones and liver last year. I’ve been on Ibrance for almost 3 weeks and the hardest side effect is breathing. It helps a lot to hear others talking about and knowing I’m not alone. Especially with these confusing lung problems. I’m understanding it might be best to put up with the side effects to stay Alive". I also have pleural effusion and have to have thoracentis a few times a year. One time the lung collapsed so I thought The thoracentis’s were over but apparently not.

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I agree. Your outlook is inspiring.

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Inspiring and great attitude. You are impressive!

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Steph you are an inspiration! Marianne

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I Love your attitude, because that is the one I have! I take Ibrance, Fluexatine and Xgeva and my scans have showed decrease. Overall, I feel good. I have watery eyes, sometimes some profuse diarrhea and very dry hair and skin. As far as I'm concerned that is nothing in comparison what others are going through!! We're taking a 3 week vacation to Florida and I'm looking forward to the sunshine! I don't dwell on this disease, because that doesn't help anyone! I have great positive feedback from family and friends and I enjoy dinner and wine! This cancer sent going to win. If you let yourself jump too far ahead, you will get nothing but negative results! The mind and body are ONE, so positive attitude wins EVERY TIME! God bless and hats off to all of us fighting this crazy disease. God is good and His plan is perfect, so just trust and keep smilingly!! Kathy from Syracuse!

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I also had the lung collapse after thoroscentsis procedure! That was really weird feeling!!

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That is what happened to me. I honestly don't remember a lot of what was going on the time. I was getting so little oxygen I could barely think about anything except breathing. Did you end up having surgery too??

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No my long pop back up after about 30 minutes, thank God! It was a very strange feeling as you know. My fluid has been gone since January 2018 before I actually started taking the I Brandts it hasn’t come back since, at this point anyway

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Mine would not come back up. Needed thoracic surgery. The surgeon ruffed up my lung and stuck it up from what I understand. I had pain for almost 2 years, but it is gone. :)

Most of my fluid is gone and I am back to normal life and been on Ibrance and letrozole for almost 2 years. :)

Life is good!!!! :)

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Wow that’s scary!!

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Hi Becca,

I was diagnosed with breast cancer 11 months ago on 19th March 2018. I was initially told it was early stage and that after a year of treatment I would be "cured". But after the mammogram, ultrasound and breast biopsy I was sent to hospital for several MRIs, CT scans, two more biopsies (endometrial and lymph node) and a PET CT scan which showed that the disease was in fact metastatic. I found that out on 16th May, which is the day I started treatment.

So I am not a long timer just yet, but there is a remedy for that: time! I have every intention of being around for a long, long time. My oncologist said I have "many years" and I am inclined to believe her.

Keeping a positive attitude and a sense of humour can really help. I exercise regularly and watch my diet (I am naughty at times though!)

Take care,

Sophie x

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I am a 64 year old woman. I had a complete mastectomy in 1997. No cancer, no issues for almost 20 years. Thought I had beat it! I went to the doctor with what I thought was a severe case of bronchitis in August of 2016. After being sent for a simple x-ray, a mass was discovered in my lung. C-Scans, a needle biopsy and Pet Scans found that I have metastasized breast cancer in my lungs. I was placed on Ibrance and Letrozole. I have not experienced any serious side affects other than my left eye constantly waters and fatigue. I often feel guilty because I am doing so well. I go to the Stephanie Spielman Breast Center at Ohio State University in Columbus, Ohio. They are unbelievable!!!! I am not naive to the fact that I know one day the drugs will quit working but for now I am living life to the fullest!

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💕

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Hats off to you! I feel the same way! It's almost a year since this diagnosis and my docs are wonderful! Lots have been learned about breast cancer and we know it can only get better! I plan on many years ahead, but when God decides it's time there is nothing anyone can say or do! Just have faith and continue to BELIEVE! We can kick cancer's ass if we continue to fight! Good luck to you! Kathy

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You got the right attitude! That's the way I've decided to live my life! I don't think a lot about this disease! I count on the Good Lord for the strength to live each day and be grateful! Good luck to you! Kathy from Syracuse, NY

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Hi Becca,

I was diagnosed on July 8 2016. Thought I hurt my rotator cuff again since I had it repaired in May of 2015. Turned out to be cancer in right arm ribs back hips. Main source am lump in right breast. I had Amani in sept 2015 and it was not found.

I was put on trozale and Ibrance about 22 mo then faslodex ink and Ibrance then Afinitor and Faslodex then just Faslodex. Markers continued up. So I am now having IV chemo for 12 treatments every week. Hope this will put me in remission for a long time. I am 73years old. I have 4 great kids and 7 grandchildren.

I get more hopeful everyday that something new will come along.

Believe me I do get very bad down days. If they come around again I will ask for antidepressants I did now realize how bad I was until recently until my kids told me how I had changed.

I hope those days are over. I started buying things I though t and I would not be here to use etc. But feeling hope full again.

I guess we all go through these stages.

Let's count on a future and hope we get it.

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I finally decided to have my bathroom redone. I hesitated to spend money because I thought I wouldn’t live long enough to enjoy it. I initially even thought it was a waste to buy new clothes. That’s sad.

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I also wouldn’t buy anything but food and medical supplies when I first found out as I figured it was a waste of money.

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Isn’t it weird? I guess we were so overcome by the enormous change is our lives, we saw our lives as over. And here we are...

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I was the same way initially. Now I’m a shopping diva.... love to decorate my home and shop for new clothes. I live life one day at a time.

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Good for you! I do the same! Cancer wins when you stop going foreword! Get busy living or get busy dying! The choice is yours! Good luck! Kathy

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Retail Therapy- gotta love it!!

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I was thinking same thing. Now back to buying what I want when I want

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That’s how I felt the other day when my freezer broke..hubby wanted me to go with him John Lewis to look at new fridge freezers..I told him I wasn’t interested..as it will outlive me so he went and chose one..I really couldn’t care less

Barb xx

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Hmmm. I get it, Barbteeth. But there was an opening to spend time together, even if it’s just refrigerator shopping. Who deserves a new refrigerator more than you???? I don’t mean to be intrusive, although I am...I’d mention this to your therapist. I sat on my couch wrapped in a blanket for weeks. I thought of myself as the walking dead. I didn’t die then, and I decided if I am not going to die anytime soon, I better dump the blanket and get going. It’s not easy. I have bad hours, days, sometimes a week of funk. You are very much alive. Try to keep the morbid talk in check. Better yet, save it for here where your sisters in alms can listen and give you loving feedback. We know. So, how’s the fridge🤗??? I’m getting my bathroom done and my husband is out of work. If I have only a few years left I will be performing my ablutions in comfort and style. My old bathroom is just crappy and does nothing for me. Maybe it will help the house sell for more. Do something that gives you joy and if you can’t figure that out, we can help.

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Barb - I read your recent post where you fretted that your husband is remote. Has it occurred to you this is an example of when he tried reaching out to you and you rebuffed him? I empathize our diagnosis is a kick in the teeth. I respectfully suggest you present this incident to your therapist as you weigh the stress you carry and how you can find support from others.

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Barbteeth

🌷🌷🌷🌷💫

Sounds like you are really down in the dumps. Take a warm bath with Epsom salts and a glass of wine. Read a good book go for a walk. Go see your horse. I don’t mean to sound trite or pollyannaish. We can’t change this d@mn diagnosis. We can only change how we deal with it. You’ve got years ahead of you. They count as much as the years you’ve already lived. Sending a few virtual tulips and some cosmic energy. And I am no poster child for being high on life, but I’m trying.

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Jersey girl.... how are you managing now with your new chemo treatment? Side effects? If I am following your threads hear I believe it has not been long that you have been on the new treatment.

I also live in New Jersey. Near Hoboken so close to the city. Hope you are feeling well today....

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I live near Freehold. I go to NYC for treatment. The one day a month ride to Manhattan is an all day affair. We try to have a nice meal on the way back. Maybe in warmer weather we will look into the theater or other activity. The shots aren’t horrible and it depends on the nurse’s technique. But I don’t have any joint pain or stiffness, as I did on letrozole. We will see next week how it’s going. I feel ok. Just tired after work. I think that’s the Ibrance I really have to get back into some exercise routine. Thanks for asking.

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I’m a Jersey girl too in Rockaway NJ

We should have a Jersey meetup. I would love to find other “Thrivers”.

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I have thought the same thing. It would be nice to meet one of these days. Maybe when the weather is nicer we can arrange this in a location midway.

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Maybe in warmer weather we could have a day out.

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I would love that. Just say when and where.

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Hi Becca

Had mastectomy 24 years ago..found out April last year I have mbc I’m many bones one of which was fractured

I reckon I’ve had metastasis for years as suffered from back pain/shoulder pain for a long time..assumed my job and riding horses was the cause...wrong!!

Anyway on Ibrance and letrazole but markers keep rising so maybe I’ll have to change meds soon..don’t want to as coping with these

At my first appointment with my oncologist she said this was incurable but treatable..whatever that’s supposed to mean

I’m very unhappy and full of hell..want the old Barb back

Barb xx

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Hi Barbteeth

Sounds very similar to my aunt's situation.. she was cancer free for 12 years.. the MBC came back to her bones as well.. in 2016.. last check up there was a 'slight increase" whatever that means (I don't ask her too many questions).. She too, is on Ibrance.. (that's all I know) also, they told her incurable but treatable... she will be going for closer time lapses check ups at this time..

I hear, there are so many more treatable options & more to come.. I am pulling for better meds to 'treat'... just like any other bloody disease.. God Bless you! My prayers are never-ending for more advanced treatment!

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Bar teeth, I worry about you. No one can live in the past which is what you are trying to do. We all get older, slower, lass beautiful, etc with age. The old Barbara could have been run over by a truck or had some other thing happen to her. The new Barbara needs to look forward and figure out how to make this new life the best she can. It’s not easy but it is the only way to really live. Embrace your husband and do the things that you can do with him. Tell him thank you for sticking around while you have struggled. Find some things in your old life you weren’t happy with and improve them. Meanwhile we are sending hugs!

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Hi there

I know all this about ageing etc..but I still hate it..I need to accept myself more as you pointed out..however looking forward is trickyif you don’t know how much forward there’ll be

Barb xx

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I struggled with wanting to know an exact time frame. Right now just trying to - live

One day at a time - sweet Jesus, like the song!

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I get stuck in that conundrum too. I always thought I’d live to my mid 80s because there is longevity in my family. Then this. Then getting told at age 60 I might have 10 years. I’m almost half way thru that. The thing is, it’s all a mind game that we had any reasonable expectation at all even if we didn’t have this blasted cancer, we could be dead tomorrow. The well people out there look at us and shake their heads, “what a shame.” But the truth is, they could be gone tomorrow. Nothing and no one knows when the gig is up. Our emotional issue is that we have this albatross around our neck, so we confront our mortality daily. Other people don’t have to do this We tell ourselves stories to feed our fear or our hope. Either way you will get up tomorrow. Are you sick and tired of being caught in this unending wheel of suffering because you cannot let go of your pre cancer self? You are being robbed of your present big time. Robbed of joy and ease and peace. It is not easy and I don’t give this “lecture” without being reminded how hard it is for me to not surrender and sink under the weight of having cancer. I struggle. I don’t believe that God has this plan for me or trust in a higher power to get me thru, so the weight falls squarely on me. I have had to do whatever it takes to live a life not constantly enveloped in fear and depression. I don’t say these things lightly to you. Be very honest with your doctors and therapist. Have a sit down with your husband and Have a heartfelt conversation. (although run that scenario by your therapist first so she/he can help you). You say it seems like your husband is preparing for life without you. If you cannot buy a refrigerator because you won’t be around for it, maybe he is trying to carry on so he doesn’t get dragged down too. He might feel helpless. So he plays golf or goes out. Your life is not over. Put two fingertips over your radial pulse. Bet you feel a strong heartbeat. You are so smart and accomplished and have resources to enjoy life. Yes, there is the big C. It isn’t the same and will never be. Nothing is permanent. I hope you will decide to put cancer in it’s place so you can enjoy many years ahead. Whether it takes pills, therapy, standing on your head in yoga...there are ways to go forward with more ease and peace. And many moments of joy will follow.

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Well said...inspiring

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I too want my old life back. I read how positive some are. I just can't wrap my head around the words stage 4. Had a meltdown last night. I am just so angry. Wish I could get out of this slump. I have been consistently sick since last October from my trip to Alaska. Bronchitis, colds, flu and now a ruptured ear drum, can't hear out of left ear. I am just tired of being sick. Is this going to be the new norm?

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Look into chaga mushroom and cbd oil. I also juice greens. Garden of Life had a green powder you can add to juices and smoothies. How about a probiotic?

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I have done the Chaga in the past. I do take a probiotic plus other herbs and vitamins. Thank you for the suggestions.

Robin

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Hi there

I really feel sorry you’re poorly..it’s bad enough dealing with this disease

Although I’m not I’ll with viruses and my red/white cells have improved I’m in constant pain and don’t know what to do with myself..if this is how the rest of my life is going to be then I don’t know how I’ll deal with it

Barb xx

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Can your oncologist give you a referral to a pain doctor (not sure what the official title is). If you are in constant pain, it’s no wonder you cannot get ahead of this.

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Hi

I’m going to ask today..I can’t go on like this anymore

I went riding with a friend yesterday and the pain was horrendous..I think she won’t want to go out with me any more..I’m no fun

Barb xx

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How can you be so n all that pain. It has to be managed. I’m glad you are looking into this. Let me know how it goes. 🌹

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Yes I’ll let you know

Some days are better than others but every morning it’s one of the first things I think of as well as the mbc..what a life!!

I wish you had known me before all this..I guess we were all different pre mbc

Barb xx

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Hi

Saw my oncologist today and she wants me to try acupuncture as she thinks it will benefit me

She also reminded me of the state I was in when she first saw me... I couldn’t even groom my horse let alone ride him as I was breathless..now I’m not so I guess I’ve forgotten that!

I’m to take the oxycodone when needed and try not to struggle on and be uncomfortable..easier said than done

However I’ll do as she suggests and go from there..I want a magic bullet but guess that doesn’t exist

Barb xx

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Oh Barb I'm so sorry your pain is like that. I will admit mine was the same before I was diagnosed and for months after and I know the feeling of wanting to give up. I didn't even realize it at the time but one of my early appointments with my oncologist I guess I was restless during the appointment, something that was different for me as I'm a calm put together type of gal. My oncologist who had her 2 medical fellows with her asked them to leave the room and said...how is your pain? Not bad I said. She looked me in the eye and said....Sandra no offence but you are not telling me the truth. I can't in good conscience let you leave like this. I know you feel that it is a weakness to give into the pain but honestly I am telling you that I feel it is a weakness to let this pain control you. You need to be your best self to fight this beast. So we developed a plan of attack.....and it has taken me awhile to get to this point but I most days feel so much better and my pain controlled. At every appointment pain control is discussed and she's a sneaky one and has enlisted my hubby to observe me and report to her if I should not tell her the total truth or try to sugarcoat it.

I hope your oncologist develops a plan to ease your discomfort. Don't worry a true friend will totally understand and be there the next time you plan your ride together. You know I've never been on a horse but if I was close I'd love to go with you. I'm not sure who would be more scared....me or the horse as I hear that can sense when someone is scared out of their wits.

Sending you a virtual hug and please let us know how you get on today. I do also use a heating pad regularly, my sauna as I have mentioned and a Ten's machine as someone mentioned. Take care.

Sandra

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Hi Sandra

She thinks acupuncture will help me so I’ve been referred for that..she’s told me just to take the strong meds when I ride and be comfortable..so I’ll be a good girl and be obedient..really goes against the grain..I’m a bossy britches!!

I’ve got my little infrared sauna now so been trying that...the bloody cat was in it this morning..hilarious!!.. don’t worry it wasn’t on!

I wish you could ride with me..we would have fun and put the world to rights

Barb xx

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Thanks for the update Barb. Just got back from my 'Dracula visit' as I like to refer to my blood test days. I think acupuncture will likely be very beneficial.....most people I have talked to swear by it. I can certainly relate.....I'm bossy and stubborn too and prior to the visit I talked about above I only took my pain meds after I felt I couldn't carry on without taking something and as a nurse I know that is a definite no no. So I started taking them regularly and boy did that make a difference. I'm not taking Oxycodone but honestly I've not known too many patients/people that do not get very good pain relief from it. I think the ticket is to take pain medication regularly and if you don't need this strong all the time still make sure you take something else in between. Also I'm sure your oncologist warned you about making sure you take something to prevent constipation....you've been taking morphine so likely already have something that you take. Put away your 'bossy britches' and start into a routine. You'll hopefully be feeling much better real soon and enjoying riding and life in general again. Take care and keep us posted.

Sandra

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Hi Sandra

I’ll start them tomorrow and behave and stop being argumentative with everyone when they give me advice!!

Thanks for thinking of me

Barb xx

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Sounds perfect Barb. I know I certainly am mrs cranky pants and argumentative when I'm in pain. I think that's human nature and well when you are in that state of mind forget accepting advice. You're not alone.

I always think of my fellow warriors and don't want someone to suffer when there is help and options available.

By the way I'm glad you clarified that Marmaduke was in the sauna while it was not on…..scared me for a quick moment. Good luck with your new routine. I'll be checking back to make sure you stick with the program.

Sandra

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Thanks Sandra

Barb xx

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Hi Barb. Good morning. Are your new pain medications helping you be in less discomfort? Just hoping they are working better for you.

Sandra

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Hi

I’ve only taken paracetamol and ibuprofen today as dossing about

Took the oxycodone yesterday but not much difference..I was hanging about at the stables for ages waiting for the farrier who was late..then had a ride out but was in pain..maybe I need to take them regularly but I hate the side effects

Sorry I’m such a misery

Thanks for asking though

Barb xx

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Thanks Barb and please don't apologise. I just want you to feel better. Were you prescribed the regular oxycodone or the extended release one? Yes of course you need to develop a regular routine of taking them in order to build up a systemic level in your blood stream. I am thinking that likely if you took the immediate release version it peaks in about an hour and then it likely was ineffective when you went for your ride. Just something to consider. Soldier on my friend.

Sandra

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Hi Sandra

I’ve been prescribed oxycodone..do you have that one and does it help?

Barb XX

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Does your doc know your in a lot of pain? They can write pain med scripts, mine does.

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I am sorry you have so much pain. I would see a pain management doctor. Maybe a TENS unit would help. You have enough on your plate as it is. Let me know if you can get some relief. I am sure you are still fun.😊 I love horses, I would ride with you❤

Robin

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I go through good periods and bad periods. Some mets are much more painful than others. When I have the ascites I have a lot of kidney pain. I am lucky in that when the ascites stops (when I am on a med that works) I don’t really have cancer pain. I have typical aging stuff arthritis and such. My biggest issues are the constant diarrhea and feeling low energy.

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Hi Becca. I was diagnosed May 2018 with extensive bone mets. Like a few others have mentioned I probably had it for quite sometime before that as I had been really suffering with back and rib pains for a long time prior. I was/am stubborn and even though it took me almost 10 minutes to turn over in bed for months just took a Motrin and soldiered on with the pain. It was only when in early March last year I woke up one night very SOB that I though I'd best have it checked out. Turns out I had a pulmonary embolus and then the subsequent testing that followed determined the breast cancer and mets. My oncologist like many others tells me and hubby that we will have years.....whatever that means. Last time I saw her we had more of a candid talk and she told me that her current 'poster child patient' has been living with MBC for 8 years and went on to say that was before the days of Palbociclib and that her particular patient was much older than I am when diagnosed so being younger and without major co-morbidities beforehand is looked upon as more favorable. That particular patient has just recently started on an active chemotherapy agent so she has done well. She told me that with any luck I would be her next poster child and she will do whatever she can from her end. I certainly am going to fight as much as I can and I know she is in my corner. Let's all kick this cancer to the curb!

Sandra

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8 years would be brilliant ..hope we all get that result

Barb xx

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Sandra, your onc sounds wonderful.

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Thanks Marianne. My hubby and I really like her and bonded to her since the first appointment. I think being a nurse makes me a realist and I don't ever want things sugarcoated and that's her style as well, although she isn't blunt in her delivery of information if that makes sense. She knows what she's getting with me. At our 2nd appointment when I checked in the receptionist handed me several pieces of paper to fill in. One was a questionnaire( check boxes mostly but 4 pages total) about how I felt, what was bothering me etc. I was called in to see my oncologist so quickly I didn't have time to fill it out so I apologized. She said don't worry you will get that given to you every time you come for an appointment. I looked at her and said 'that will be a waste of paper because I can tell you right now I'm not filling out that crap. The reason I come to you is to discuss what is bothering me so why would I fill out a form'. She laughed and said 'why am I not surprised. You are the first person who has ever said that to me so directly.' I said and my husband was hanging his head.....well my dear that's the way it's going to roll with me. Ice breaker for sure and now one of the things I like is our informal meets.

Sandra

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Well at 5 years in I’d love 10 more but will hesitantly take 5

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I certainly hope you can as well. Of course I should have added to my post that my oncologist also said that even though her 'poster child' patient has had 8 years and now on active chemo she is still hoping she can give her 5 more years of quality life and who knows what the future brings. Rock on!

Sandra

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Nstonerocks....you usually have a very good attitude. You seem strong minded. I know we have to be realistic, but I believe you will be and can be around much longer than you are thinking. Alot can happen in the next few years that are positive! New treatments and cures. Keep the faith. Miracles do happen.

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I am stubborn more than strong. As a member of the glass half full society, I struggle to find peace and joy and to look forward, not back or down. This mbc has been a tough teacher. It has made me pause and take a very close look at myself. It ain’t all pretty! 😱I live more consciously now and am changing my knee jerk responses to things. But you are right. Someone once said you can fool yourself either way: by being pessimistic or optimistic. Optimism is better all around. It may not change the hard facts, but it makes for a happier life. And,of course, the sequel to Ibrance might be right around the corner. I will take your encouragement into the ct with me. Thanks. Will let you know. 💕

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There was something you wrote a few weeks ago. I responded at the time. You came across similar to my personality which is someone who was used to moving at lightening speed- type A personality, never saying no (even if I felt like saying no). Well this cancer, or the meds has slowed me down a few notches. Now I notice things I would not have before. I say no more often when I don't feel like doing something. I am fine with this. It is what I should have been doing before. It is about time I do what I want and let go of some of the pressures I reacted to in the past. Of course I wish I had more energy, but I don't. As a result, I have to manage myself more consciously then I did before. I think my personality played a role in my diagnosis. I rarely gave myself a break. Well the past is done so now I focus more than ever on the moment I am in and my future. As long as I am here breathing I have a future just like you and everyone else does.

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That’s it! If we get anything positive out of this it is how to value ourselves and our lives. How to slow down and appreciate the people and good things in our lives. To notice the little things. To clear our minds. It’s great for your immunity and speaking for myself, makes me more peaceful and content. I don’t have a formal faith, but my readings in mindfulness and meditation help center me. I still catch myself flying off the handle sometimes. A lifetime of moving thru life one way takes time and conscious effort to change. 💕

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Absolutely agreed

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Why don't we all try to be the next 'poster child' for our oncologists? I certainly have no intention of going anywhere anytime soon. I'm still very young, so the idea of dying within the next 5 years or so is not something I am planning for.

Sophie x

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Right on Sophie. I am right there with you.

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6years!

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I year, 3 months

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Hi, Becca65! I was diagnosed with invasive ductal carcinoma, Stage 1, in Sept. 2016. Over the next 3 1/2 months, following tests of every sort, my diagnosis continued to get worse. I had a mastectomy of my right breast in Nov. 2016, when my doctors still thought I was Stage 3, during which they also removed 13 lymph nodes, because my cancer was so locally advanced. More tests followed to see where else the cancer may have spread, and a liver MRI randomly revealed extensive mets in my spine, resulting in a final diagnosis of de novo MBC, in Dec. 2016.

I have been on Ibrance and Letrozole since Jan 2017, and have done great with this. I realized at the end of Aug 2018, however, that the drugs were wearing off, because I experienced a noticeable increase in my energy Ievel; (my biggest side effect from this regimen was fatigue). I just got blood work results back yesterday and my tumor marker number (CA 15-3) has gone up significantly from where it was last November. I will have another set of scans on Sunday, but am sure they will show progression.

I have also contacted a bc med onc I saw for a consultation at the Dana-Farber Cancer Institute in Boston last year, since I read in their most recent e-newsletter that they are doing work on the development of drug resistance in ER+ women like me, to see if there is a trial I might qualify for. If not this, then my local med onc will probably switch out my Letrozole for Faslodex, and keep me on the Ibrance, but I'll see what she says when we meet next Friday.

I, too, have been told that I have "years" and I try to make the most of every day. I am hopeful that more drugs will come down the pike to keep me going, but accept that how long I stay on this earth is ultimately in God's hands.

My advice to you is to focus on the quality of your life and not the quantity. Do what you can to find and give joy every day.

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Diagnosed with bone mets from the get go in March, 2004.....15 years ago next month. No symptoms. Have responded very well to hormonal tx. Feel very fortunate, if anyone with mbc can be fortunate!

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Hi PjBin,

Have you been on same medications for 15 years?

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No. I got almost five years from Femara (letrozole) then over 9 from Faslodex and now am on Aromasin for about 13 or 14 months. I have bone mets, so I have also been on, first Zometa, and now Xgeva. The progression I have had has been rather minor. Never any pain or other symptoms. Since I have done so well, we've not been in a hurry to change meds. I was on Ibrance with the Faslodex for a few months in 2016, but it damaged my lungs--caused something called Interstitial lung Disease, which the pulmonologist described as being like gunk between the air sacs. It's only in the bottom part of my right lung but does make me get out of breath easily. This summer when it was really humid, it was not comfortable to be outside! That is one of the truly annoying side effects/symptoms I've had. I'm on more meds for treatment side effects than for cancer! lol Though this is really the only one that is a bother. I've been pretty tired alot for the last 2 years or so. And have had periods of time when I've not slept well. My concentration and short term memory are not what they were. I'm 72 and always wonder what I would be like now if I'd not had cancer........ I'm from a long lived family. One grandmother died just before her 102nd birthday.

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Thank you for sharing all this. Very positive and inspiring.ro hear how well you have done.

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Diagnosed initially in 2006 with IDC Stage 2. Recurrence in 2016 with bone and lung mets. On ibrance and Letrozole until now. Meds working great, no side effects and lung nodules diminishing. Scans again first of March. We got this Becca65. 😊💚

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I was diagnosed with de novo stage IV breast cancer after finding the lump in my breast myself and a PET revealed one met to my manubrium. Received radiation for the met (and surgery, chemo, and radiation for the rest) and went on exemestane until Feb 2018 when a CT scan showed a met to my liver. Made plans to retire to Florida at age 53 and did so in December. Am loving life every day and hoping to have much more of it. On my third round of faslodex and ibrance, which are working well so far. Who knows what the future holds, but today is great!

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You are one brave warrior and deserve a break and retirement in Florida. Sounds like you have a great attitude which is very important to your wellbeing. I, too, am on my third cycle of ibrance and faslodex, this month on 100 mg. My only side effect has been an upper respiratory infection and bloody nose that I’ve had since Xmas when I was taking 125 mg. I’m hoping the lower dose will work out without the cold symptoms. Enjoy sunny Florida. I’m in freezing New England.

Margie

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Thank you! Stay warm!!!

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Margie, I'm in freezing in New England too! Would love to join Bubbles001 in Florida.

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Thank you for starting this very helpful conversation! Real life stories from fellow "warriors" are so very helpful when added to the carefully worded replies we gather from our medical professionals! I love the poster child patient example...may we all remember that we all can be or already are "a poster child" in some aspect of our lives!

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So true!

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Hi Good morning 🎀 I had breast cancer in 2010 I had mastectomy And in September 2018 metástasis in my bone hip left

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I had breast cancer 3 yrs ago this coming April. As off August 2018 i was told that i have MBC..

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Good Morning Becca65

I had stage one “non aggressive” ER/PR positive and her neg breast ca in November 2012. Lumpectomy/radiation. No lymph involvement.

Persistent cough summer of 2017 led to a diagnosis of stage 4 metastatic breast ca to my lungs. “Innumerable” nodules throughout both lungs.

I’m presently on IBRANCE 125 and letrozole. I have achieved NED (no evidence of disease) since.

I think we all have reason and hope to believe we can live long lives and maintain this as a chronic disease.

Enjoy each day as a gift❤️

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Hope, one of my long living face to face metster friends had lung mets! She had a cancer that was hormone receptor - and her2neu + . Her husband owned a local insurance company and she kept the books for their business and was able to keep doing that for about 12 years after being diagnosed with mbc. She was able to stay pretty active until the last few months of her life. Her 30ish daughter died suddenly and very unexpectedly from a brain aneurysm about a year before my friend died. Her daughters death really devastated her and her family, which I sure understand! We had the same onc and the onc and i both thought that this death just took everything from her and went down hill after that. Such a huge loss for her and her family. Anyway, I thought of her as the poster child for lung mets! She sure did well for a long time! One of hte things that my docs have referred me for was pulmonary rehab. It's like PT for those with lung conditions and was alot of fun! It also put cancer and difficulty breathing in perspective for me. I often had the highest oxygen level in the group! And some of the others were waiting for transplants..... for me, that really put MBC in its place! I got attached to two people waiting for transplants........ a hard way to live, knowing that somebody else must die to help ....... I was typed for a bone marrow transplant a long time ago when a child from a local church needed a transplant and had an unusual tissue type. I was prematched with somebody a few years later and had to have more testing but was not a match ultimately. Having to give that up was one of the losses that hit me when I got this rotten cancer! i'd gladly give some of my blood or marrow for somebody who needs it to live! Wish we could just do that for one another and fix this darn cancer (thinking much nastier words for mbc! lol) I could go on and on and iwll stop now.....l

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Thanks for telli g me about your friend. Stories like that give us all hope for a long life. Best wishes to you❤️

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I'm 35 years old now, I live in India, two years ago in feb 2017, I was diagnosed with metastatic breast cancer(stage IV) on initial diagnosis (de novo), with mets to Lungs, Liver and Bones. The biopsy indicated HER2 3+, and ER+.

I have undergone 6 cycles of TCHP(chemo+herceptin +perjeta) and around 30 cycles of herceptin + perjeta as maintenance therapy for her2+. I’m also taking aromasin tablet daily to tackle the ER positive.

In the recently taken PETCT, the primary tumor in right breast, the mets in lungs and livers have resolved, the mets in bones are stable.

Thanks to my ever loving husband, my children, this community, and fellow humans around me, am able to lead a good quality life so far and wishing to have many more months and years added to my life.

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3 years 7 months

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I was dx with mbc from the start bone only in Nov 2017. I became NED April 2018. I remember asking how long only because i hv young children. My doc told me i hv decades not yrs. I still hv bad days but my good days outweighs those bad days. I refuse to let this disease take me down. I love life and im going to keep fighting until there is better treatment or a CURE. We all need to stay positive and continue to learn from each other. Im remodeling my house and i wonder at times will i live to enjoy it, yes i am going to live to enjoy it and raise my 2 beautiful children. God bless each and everyone.

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Love your answer 🙏❤️ Only GOD know

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2 years since diagnosis. Currently no active cancer

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Diag Jan/feb 2017, de novo, ER, PR pos. Left breast 4 tumors, spine 2, liver 6. 4 cycles of IV chemo (red devil). Then 2 nd opinion and moved to Mayo. Currently on 22 cycle of ibrance, letrozol, also on zometa. I am happy to say I have been NED since Aug 2017!!!!! Still on 125 mg ibrance...but neuropathy in hands and feet is getting much worse. Next PET in a couple of weeks. Hope all is stable and an increase in gavopitin (sp) helps.

I too have good days and not so good.

30days after diagnosed. I started looking for a piece of land and drawing up plans for a house and casita for my mom. I am happy to say 2 years and we are now moved in. Still a few boxes. I have a great husband who was also my General contractor. Jan 2018 retired after 27 years of gov service to become my own superintendent. A lot of hard work....but it kept me going.

I want to live every day to the fullest. Now that the house is built....starting to plan a family vacation with my 4 grown kids plus significant others..hope to live long enough to see grand babies. Oldest is 32.....

Love my sister MBC friends...you all give me hope!

Lisa

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Diagnosed September 2017

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I was diAgnosed 1/16 and found out it was stage 4 In February of 2016, had my ovaries out immediately and started taking letrozole. My insurance company approved IbrAnce in July of 2016. So far all my scans hAve been clear and my oncologist says I’m his healthiest patient. I’ve managed to keep my life very normal,working, traveling etc. I also went through the beginning not wanting to buy anything or make any plans, I do not do that any longer. I also stopped drinking alcohol and went to a plant based diet which I do think has made a big difference physically and mentally.

I only had bone Mets, my oncologist says I only had “a little bit” of cAncer lol, I’m hoping it just stays dormant.

So nice to hear others are also doing quite well!

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Welcome. You indeed are doing fabulous. So glad to have you as part of the board. You can be a great motivator to us all. We all approach as we see fit. Keep doing what you are as it is clearly working. Take care.

Sandra

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4 years mets to bones only

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Congratulations on your 4 years. Wonderful to hear success stories as it is very motivating.

Sandra

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4 months. Trying new meds, started on faslodex and Ibrance, stopped working just started capecitabine 500mg 6 times a day . Anyone else on this? Prayers

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Hi Becca! I love your attitude! My aunt was diagnosed with MBC 2016.. she is a lot like you... I'm the one who gets all hung up on whether or not treatment will work and how long before they have to switch to something else..my aunt is not interest in the web site.. We live together.. I didn't know she was waiting to hear from doctor as her markers went up.. Sometimes I get so upset.. kind of angry.. & I know I need to stop... My heart goest out to all of you! I ask God in a simple prayer everyday..

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Thank you for the positive energy and prayers!

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7 years and going strong. My last scan showed no evidence of disease.

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7 years with MBC. Diagnosed with Stage IV from the beginning. On chemo now and my cancer changed type from ER/PR+ 100% to triple negative. Saw a term they are calling patients that live past their prognosis -- "exceptional survivor." May we all be Exceptional Survivors!

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I have been living with MBC for 2 years in April, still working full time and feel pretty good most days, except for the fatigue. I try to eat healthy but it is a challenge since I am also a type 1 diabetic and when the blood sugar goes low I eat something with sugar. Doing the best I can under the circumstances, the hardest part for me is pretending nothing is wrong around my co workers.

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