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SHARE Metastatic Breast Cancer
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Hope

My name is Ruby and my breast cancer stage 2B first was treated in 2004/5. I had chemo, radiation and 5 years on Tamoxifen. This spring it returned to my ribs and lungs and I was devastated. Yet, after 3 months on Xelota the lungs are improving hugely. I had read some stats that really scared me but my doctor says there are endless drugs she can treat me with and this is a very treatable thing for years. I was glad to read that other women have been told the same thing. The SHARE hotline has really helped me when I became anxious. I am glad to sign up for this site so we can encourage each other.

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Hi ruby

My mbc came after 24 years..extensive bone mets

My oncologist says it can’t be cured but is treatable whatever that means..on Ibrance letrazole..first scan results on Wednesday..I’m worried but my markers have dropped so that’s good

Best wishes

Barb xx

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Thanks for the reply. I have been assured by 3 doctors who were involved in my diagnosis that this is a very treatable disease and can be long term. Reading stats on the internet is not helpful and often untrue. I learned that 14 years ago. I know of several long term mets survivors and my oncologist said that she is starting me on Xeloda and when the drug no longer works she has a myriad of others she can give me. That comforts me. I fear other mets but when I read the stories on the SHARE metastatic site and talk with them on the phone they are living well with this illness and I try to embrace this. I feel it is a bit of a lonely disease in that it affects us all so differently but the SHARE sites comfort me that so many are living well with it.

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It is lonely at times. That is why this board is so invaluable. You will never be alone in this again. We all walk this walk, so you are really listened to and supported by women who know exactly how you feel and can offer you heartfelt insights from experience. I check this board almost daily. It can be really hard and isolating out there in the land of the “worried well.” Once I was with work colleagues who were going on and on about cancer. They know my situation. I finally had the tell them “enough.” I was just trying to enjoy my lunch out with them. My doctor says the same things yours does, that there are lots of drug options out there. I feel pretty well and the drug side affects are tolerable and I mostly ignore them. I am so thankful there are many treatment options, I’ll live with the side effects. I just got back from a beautiful trip to Ireland and thinking about my next trip. There is a lot to be grateful for. I think when you face something as huge as mbc, it makes you so much more aware of the blessings in your life big and small.

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I can honestly say that the Xeloda is giving me few side effects. With every round the lungs are getting better and it is only 3 months since I started. My family notice how much better I am and I am even doing babysitting again, My first scan is in 2 weeks. I am not too worried in that I feel so much better, I am sure the lesions are smaller. I have had my share of anxiety over the last few months, especially when I was having lung pain and shortness of breath after the diagnosis in the spring, Then I talked to someone on the SHARE hotline who had exactly what I had 12 years ago and my spirits soared. She had it in ribs and lungs and later in the brain which they treated successfully. She is living well and full of life and it made me realize that they are very successful with these treatments. Glad to hear you went to

Ireland. I loved it in Ireland and would love to return. Next year my oncologist said I should be well enough to go. In other words she fully expects me to improve by then.

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Amen

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My oncology nurse warned me about reading stats etc on the internet but of course I did and scared myself so much..I now realise how stupid it is to do this as they are totally out of date

Barb xx

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Stats bring me to my knees. I know they’re out there but for my own sanity I don’t seek them out. Some women do all the research and are almost expert at what’s going on out there clinically. I’m a nurse, I have all I can do to live my life and not dwell on the dark side too often. I have a good doctor that I trust and I leave the stats up to her. Maybe that is ignorant, but I really can’t handle researching this thing a lot.

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Ignore the stats! So many variables. New meds coming out more frequently. Couple things to know about stats: you and I aren’t even counted on the stage 4 stats since our original dx was stage 2

The 5 year stats are also from 5 years ago. The new meds are so new that we are still learning about how long they can last.

Judy Perkins...healed of stage 4.

Also, I recommend reading radical remission, Spontaneous Healing and Chris Beat Cancer.

🤗

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Your right, ignore the stats. I have stage 4 also, have been on meds with traditional treatment (a year in Sept) and biomedical treatment (last 3 months). My pet scan two weeks ago showed no new cancer spots but afew areas that are 'brighter' or 'active' so I will stay on treatment. Hang in there everyone.

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Susie

I had similar results recently. My doctor was very reassuring and we are dropping one med and going to another. Meanwhile I look for things to light up my life. One of them, my new Tonkinese kitten, is climbing all over me as I write this. Really have to trim her nails!

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Stay strong together!

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Hi Ruby, I am so glad you posted. Sometimes I get overwhelmed with seeing how many of us are affected by this disease but this has been an inspiring post with all the positive responses. My mets is to the liver and the hormonal therapies have not worked and so started Xeloda three days ago. What are your side effects?

The worst thing for me was when the Ibrance and Letrozole didn't work I went on a trial through UCLA and had to stop taking the anti-depressant I was on and switch to something else which didn't work. I had to stop the trial because the side effects were so horrific and went back on my old anti-depressant and it just has not worked like before. Honestly, the depression and anxiety I have are way harder than dealing with the cancer. I know I need meds to help with them and finally am seeing a psychiatrist to help manage them next week and hopefully find something else that will work. It sucks though because nothing is a quick fix. I really feel that once I get back on track emotionally I will be much better at handling the cancer.

For all of you who responded so positively, thanks, it made my day.

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Honestly I have few side effects. I was a bit tired with round 1 but not now and I am just finishing round 4. So that is 12 weeks into it. I feel I am managing my emotions better. SHARE has helped tremendously talking with long term survivors who are doing well. I have my first scan the end of August and certainly I am physically way better then even a month ago. Hoping for the best.

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Thanks so much for your response and good luck to you!

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I am on a very old drug for depression. Elavil. It is a tricyclic, not an SSRI , which is all the rage now because theoretically you can’t kill yourself with it. I didn’t like those drugs. I felt drugged on them and stopping it is like going thru withdrawal. I take a very low dose 10 mg. It keeps me from spiraling down. Some people are on much higher doses. It can cause heart block if you overdose on it but my doctor says I never have enough to be dangerous. All I know is that I don’t feel drugged and I can cope. It is not a miracle. I cry, I feel down some times but as I told my doctor you don’t have a drug that can make things all right. I take Xanax 0.25 once in a while less than 3x a month or less. It helps when I’m circling the drain. As your doctor about Elavil.

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Thank you. I will ask about it. I miss the old me and the old me was a fighter and that's what i want to continue to do.

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Dear Kim

Try meditation tapes. Tara Brach has a wonderful voice and is very calming. Also Kris Carr. She has a slow growing stage 4 liver sarcoma with Mets and her website is inspirational. She also has meditation tapes. You’ve been thru a lot. Say nice things to yourself and try not to compare yourself to a previous time. Look at all you have gone thru and you are still standing and onto your next treatment which I pray works for you. This journey requires superhuman persistence and endurance. The fact you are reaching out and looking for ways to cope is so positive. 💕

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There are a lot of us out here, so hang in there with us. We're going through this one day at a time, together.....let us know how your scan goes. All the best!!

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What is the SHARE hotline please?

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Phone 866 891 2392. It is a hotline for women with breast cancer. They are volunteers who have had breast cancer. Centered out of New York City. There are many who answer who have MBC although not all of them. I have made friends online with one of them who I love and phone her almost weekly when I know she is there. When I get anxious I call them and they offer so much hope. Most of them are quite knowledgeable about the disease and I find this helpful as when I see my oncologist It is only for about 10 minutes and then if you have questions later what do you do. There is a nurse I can phone but I never feel she is as reassuring as those I talk with on the hotline.

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Thank you for sharing this. My bloodwork never showed a normal or even close to a normal after the chemo (16 weeks) and radiation. I tried Tamoxifen and got so sick and I opted out. So four years later my MBC is here. I was never told I had MBC and yet I was never told I was in a remission either for the past four years either. I saw a tumor marker rise in October and decided with my oncologist to fight it with aromatase inhibitor and the Ibrance was added a month later and now markers are dropping so I am good with this. So while this is not cureable at stage 4 it is manageable. I am curious as to what numbers constitute a remission as I have never had low CA numbers, but my own immune system kept me free for four years. I was told I have sclerotic lesions on bones, all over. Two oncologists with different opinions. One said scar tissue from past chemo/radiation, the other said "no" it is cancer of the bone. So sharing info here on this site is the greatest source of information from around the world.

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Glad to hear that xeloda is working because that is what I am on. Just ended my second cycle. Have an icky rash in my arms and the doctor prescribed a steroid creme for it but I swear it makes my anxiety, which I am trying to control, worse. Have you gotten the hand and foot issues.

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No hand or foot issues and it has been almost 4 monhs on xeloda and it is definitely bringing me back. Lungs way better and almost no side effects.

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Thanks Ruby. That’s encouraging and I feel pretty good on it except for the rash.

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I very occasionally have had a bit of upset stomach but nothing that did not resolve itself and I have not had the diarrhea either. My issues seem to be more emotional. I am new with this MBC thing and although my first scans were really good still getting my head around this is difficult. I am feeling remarkably good after almost 4 months and have been way more upbeat but I think I have told people too much. Went to church this morning and people certainly are feeling a lot of sympathy for me and I want to dispel the notion I am a dying woman because I am not.

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