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SHARE Metastatic Breast Cancer
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In February 2018 I was diagnosed with Stage 4 Breast cancer that has metastasized to my bones. They found the cancer in the bone after 1 1/2 years of appointments and misdiagnosis. After the biopsy in my hip they then had to go search my breast for the original cancer. It was not detected on a mammogram. Started Ibrance and Letrozole. It knocked my neutrophils to 0.3 and I had to wait 3 weeks to start my second month. This is all new and frightening to me.

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Dear Sarcie

Many of my past posts talk about being scared and depressed with this diagnosis. A totally appropriate response. I am sorry you have to deal with this. It’s really important to ask for help. I needed and still go to therapy. I’m on antidepressants which help. When I feel the anxiety getting out of control I take Xanax. In the beginning I was a mess and took time off during chemo to become emotionally functional again. Someone told me it gets better with time and it has for me. 4 years w Mets to lungs. Living with mbc is a work in progress. You will find lots of support here from sisters who walk in your shoes. When I was at my lowest I called the SHARE hotline and was match d with a wonderful woman who was over 10 years in with the same clinical picture. I have also sought out other forms of support besides drugs and therapy and try to live a full life with gratitude. That all comes in time. It is still very new to you. Baby steps. If you feel good about your oncologist the next step is getting the emotional support you need. ❤️

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Thank you. I was taking antidepressants before so that has helped me keep myself under control some. I just find that I don’t get as much info as I would like. I have asked for all my reports and tests so I can see what exactly is going on but that seems to be taking time. I am a person that needs all the data so I can understand.

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Have you told your oncologist that you need to have this info to make decisions and understand your treatment? Are u comfortable with your oncologist. It’s important that you feel a rapport with and confidence in this person. I’m a nurse and unlike you I don’t want to know everything just enough to understand what I’m dealing with and treatment options. Sounds passive but I can only deal with so much info. When I start researching the internet it is not helpful to me. But lots of people can handle it and want to know, and it’s your right to get that info.

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He is a nice man and easy to talk to but I find he doesn’t give a straight forward answer. We have a shortage of doctors and they are overworked which results in feeling rushed though your appointment. After getting the run around for almost 2 years I am making sure that I have all the data as it seems I have to fight for me....nobody else will if I don’t.

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Where do you live if you don’t mind. I’m near Atlanta so my oncologist is 10 min away. He is very busy but always takes time to answer my questions because I ask tons... They probably hate I’m a Nurse 👩‍⚕️. Hey you gotta do what is best for you. I’m sorry your oncologist is not giving you straight forward information that’s critical with mbc!!

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I am in Canada. Nova Scotia.

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Don’t be afraid to change oncologists to one that makes you feel confident and good in your gut. I work in PA but live in AZ. My first onco in AZ everything was so hopeless feeling. But the one in PA gave me confidence and optimism. When I found out I was later stage 4, I was open to changing oncos if I felt they weren’t positive. They were though. I’ll be relocating to PA now. My drive is 75-90 minutes to the onco in PHL. For me, it’s totally worth it.

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Wow what a drive! I was born in Wilkes Barre Pa. May I ask what you do? Great to hear your working. Good luck with your relocation..

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I work at a corporate office for a retailer. When I relocate my drive should only be 45 minutes!

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Still far but ya gotta do what ya gotta do. I was going every 2 weeks for blood and 28 days on chemo. Fortunately I’m 10 min away. Some people do travel far to see this oncologist. Good luck with your relocation.

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You should just be able to have them make a copy and get your reports, scans, blood work etc. I don’t even ask they give them to me. I have a binder I keep them in. I keep going back to look at things like scans blood work. Or if they don’t just go to where you get scans and ask, by law they have to give them to you. I’m sure they know you. Being a Nurse I’m a little more outspoken, so that helps with medical stuff. I hope you get access soon so you can look things over. I wish you the best, this disease is hard enough not knowing what is going on is harder.

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Do u have other options ? Thankfully I live close to both Philly and NYC so I could switch if I had to. It takes all day to go round trip to NYC but I’m comfortable where I am for now. Have you discussed how you feel with him? It’s hard but maybe he would step up his game a little if he knew what you needed as a patient.

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I don’t have any other options as I am in a smaller city. I make lists of questions to ask him each appointment. Maybe I will try and explain him how I’m feeling. I have a hard time confronting people.

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Ask for copies of your lab results when booking your next appointment. Highlight the concerns. Take those with you to next appointment and when they are looking at your current ones ask them what the number is and compare it to your highlights in case you need to say isn't that high or low.

I get my printout of numbers after the appointment if I ask for them. I was told my numbers on counts were not low in visit, print out said otherwise, so next time I am taking last appointment numbers with ranges and asking while in visit what exactly are the numbers? Like the ones especially for red/white blood cells and any other that are considerably low as the print out should note.

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Beware the labs vary on what instruments they use so they will specify a number and a range and usually indicate high or low, but because they use different instruments that use different equations to compute it can get confusing to manually check yourself. Also I found ibrance on a Canadian health site that states its ingredients. I think it should be printed in average language in the US health gov sites that way. My onocologist seemed to be unaware of fungal toe problems with cancer meds. Merck Seems to be aware of them.

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Yes it is. But as you said if you don’t advocate for yourself...One thing about dealing with something like mbc other things seem don’t seem so threatening anymore. I hope you find the strength to make your needs known. You’ll be with this doc for a long time. An investment in your future so to speak.

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Hi Sarcie!

So sorry to hear that! Are you young? Back in 1999 with a lump, my Gyn said there is no way i have breast cancer because i was only 30. I went to a specialist anyways and found out it was breast cancer. It was barely stage 2 at that time. I had a local recurrence in 2001 and in 2013 after being treated for months for adult onset asthma, they found my lung met. I also have it in my T9 and iliac but at the moment I am in a remission state after taking Ibrance then kisqali all last year.

Ibrance was too hard on me. After going down in doses i switched to Kisqali. After going down in doses of that, my Pet scan showed no active metastatic disease. And i was only taking one Kisqali a day! These are good meds and i hope they work for you too! They are slow acting meds so dont get discouraged if it has been 4-6 cycles before you see a change.

Best wishes for you. Keep us posted.

Missy

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I am 54 so not young 😉. Thank you for the info on Ibrance being a slower acting med. My doctor said I wouldn’t go into remission, that the Ibrance would stop it from advancing but would not get rid of my existing cancer. My left hip and femur have numerous lesions along with my skull, spine, arm, ribs ....it seems to be everywhere.

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Are you getting Xgeva shots? It was only months after getting the shots every month that all my bone mets went into remission (dormant, calcified). If you arent getting Xgeva once a month shots, PLEASE ask for it.

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Also when i say remission, i just mean not active. My lung mets flare up then they go dormant, then flare up. I will fight this the rest of my life too.

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I will ask my doctor about this.

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Please do!!!

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Welcome to the group nobody wants to need! First, let me tell you that I was also diagnosed with denovo Metastatic Breast Cancer (denovo means no early stage bc diagnosis, but stage IV from the get go) with no sign of it on mammograms. Since you are on Letrozole and Ibrance, I will assume that you are dealing with a cancer that is estrogen receptor positive. Some of us with E + mbc and bone mets only do really well for a long time! I was diagnosed 3/1/2004, just over 14 years ago, and if you saw me out and about, you would never guess that I have cancer! I got over 5 years with Letrozole (plus Zometa for my bones) and over 9 years from Faslodex. Ibrance was not good to me but alot of women tolerate it quite well. I was scared to death when I was first diagnosed! When I got my first test reports about 3 months after starting treatment and had improvement, that helped me feel a bit less anxious. About 7 months after starting treatment, the cancer center where I go had a weekend retreat for bc patients and I met some wonderful women with mbc and that gave me hope and helped me calm down alot. I found out that there was an mbc support group that met once a month, and started going to it. It was a self led group that had broken off from a general bc group at the cancer center. I attended that group for several years and then it kind of fizzled out. But by then I had on line resources--not this site but a similar group, plus I'd attended some big bc and mbc conferences and learned alot and became an mbc patient advocate/volunteer. You mentioned that your onc isn't as direct as you would like (I forget your exact words and maybe I am misunderstanding.....). If one of the big things that led you to that conclusion is that he doesn't make predictions for you about how long you might live or how this cancer will play out, that is actually a good thing! Medical statistics are not meant to apply to us as individuals and are gathered for health care planning (big picture) and it's totally inappropriate to use them to predict how long any of us have! But statistics is seldom a popular subject and that seems to apply to doctors as much as any group, but they should know better! I don't know how remote you are geographically, but one thing that many of us do is to get a second opinion from a bc specialist onc. In the US the top tier of cancer centers are those called "Comprehensive Cancer Center." Those are listed on the website of the National Cancer Institute, part of the National Institutes of Health in Washington DC. Cancer centers have to meet very high standards to get that designation. They offer second opinion evaluations with specialized oncs who both see patients and do research and who keep up with the latest research. My insurance paid for a second opinion. I didn't think I needed it but my own onc suggested it and I went along with it and it was hugely reassuring to my husband and grown daughter, who went with me. It's okay to let your onc know what you want from him in terms of communication. He might also have good suggestions about local resources and places to get more info about mbc. When I was first diagnosed, I read everything I could get my hands on. At that time, the American Cancer Society had a wonderful 90 page booklet called something like "Breast Cancer: Treatment Guidelines for Patients." They eventually had to stop printing it because keeping it up to date became too expensive. Their website might have good info. Dr. Susan Love's "Breast Book" is generally up to date and has good info. And of course there are all kinds of wacky websites and groups that claim all sorts of miracle cures from drinking our own urine to who knows what else. Good luck to you! There is alot to be hopeful about. But the first months can be crazy making stressful!

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I am in Canada. I live in a smaller area so there aren’t a lot of doctors. Mine does work at the Cancer Care area of the hospital and I am told he is a good doctor. You mentioned you took Zometa. I had my first IV treatment of that on Saturday and I have been deathly sick ever since. My whole body aches and I can’t stay awake, the fatigue is so bad. Last night I was running a fever. I hope this doesn’t happen every time you have Zometa.

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I have had 7 rounds of Zomeda ... the first couple were really hard, felt like the flu and high temperature. Since then, I make sure they give me an iv of fluids after (they call it a “piggyback”) and I have not felt bad after the treatment since

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Nice to meet you. I was diagnosed January 31 after 18 months of being stage 2. I had some BC cells show up on a Pap smear. Then the scans showed it was in my bones. Have one met (that I’m aware) on my scalp. I’m taking folsadex, xgeva on 2/24 then added letrozole and Ibrance on April 24. I’ll see how my next labs go. My initial labs had low iron and I feel 100% better since supplementing.

It is frightening but I have to say, for me, it’s not as “dark” as the first 30 days after diagnosis. Some things that have helped me: a positive oncologist, reading Spontaneous Healing by Dr. Andrew Weil, look at website for Radical Remission Project, this board ( its the only one I’ve joined because these ladies are positive and inspiring), vacation.

Honestly, I thought about it nonstop in my first 75 days after dx. I went to Hawaii and there were many moments that I completely forgot about it! I met someone who told me her sister had stage 4 for 22 years and counting. Her sister does 2 cruises per year!

I also met w a hypnotherapist to confront the BC and talk to it. This was empowering and relieving. Finally, if you go to you tube and look up “healing hypnosis “, I have been doing those at bedtime 1-4 times per week.

Hugs.

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It has been 1 year since my diagnosis of stage 4, never had breast cancer before, no family history, so it was a shock. I am also a type 1 diabetic for 39 years, so I understand what it means to be on treatment for life, meet a woman were I work that has been stage 4 for 14 years. I believe the treatment will only get better for all of us..hang in there..

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Your story sounds just like mine. Welcome. Your Ibrance dose will probably get lowered I'm on 75 mg an finally didn't have neutropenia for the first time in a year and feel better. Take care.

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I was diagnosed in May 2018 - taking Ibrance (125) and Letrozole. My neutrophils hover around .3 to .7 or 8. I am staying in on the highest dose as long as I possibly can. I am 56 but able to retire and now stay home mostly, and that is due to low neu. Trying to stay at this dosage because it is really working. Probably will move to the 100 dose in January - pet scan at end of this month. There are lots of new medications right around the corner - 2019 should give us additional options!!

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