How Many Are We?
Comments
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Well, that stinks barbe. I'm sorry you are joining us. But welcome and try to keep up the spirits. There are a lot of ladies on here that just keep on going for years and have a lot of great advice to share. One day at a time......I really like your quote!
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I've been put on Arimidex and will be doing rads shortly. My onc said I'd be on Arimidex or something like it for the rest of my life. Why do others just do 5 years?
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Hi, Barbe. So sorry to see you here. Arimidex or one of the other 2 A/I's (Aromasin or Femara) are used after active tx for early stage bc in post menopausal women to hopefully prevent a recurrence, in which case 5 years is normally the recommended time. But these drugs are so powerful, once someone has mets, they can actually halt its progression -- as long as it keeps working. If your met or mets should disappear while on Arimidex, they would keep you on it to hopefully keep it at bay, since your bc has now shown everyone it knows how to travel.
Hope this helps... (((Hugs))) Deanna
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Thanks Deanna, that does help. I didn't use it or Tamoxifen the first time, so knew I'd be offered it if I ever recurred, but didn't know it would be a life thing. But it makes sense. At least I have other drugs to move to when/if the Arimidex stops working. Thanks ladies, for all the good wishes. I like talking to people who get it. Sick already of hearing friends and family saying "well just stay positive"! They just don't get it.
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Hi Everyone,
I'm not a newbie, but this is a big step for me - my first post.
My initial bc dx was in 2003 and first bone metastasis was discovered in 2007 when I went to see my pcp for persistent hip pain. Over 8 years since then, and I have managed to do a lot of living in that time! Liver mets and multiple new bone mets (spine, pelvis, ribs, sternum) turned up in 2013. The liver mets are relatively small and have remained under control with current treatments. For this I am very grateful!
I have been encouraged by the stories of other members and the compassion you show towards each other. Thank you for that.
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Jeenee - I'm glad you decided to post! You are an inspiration to me. Thank you.
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Jeenee thank you thank you for posting. I just had an aweful pet scan discussion with my onc yesterday. The proverbial Christmas tree no organ involvement yet but I still took it bad. You give me hope and for that I am so grateful😊😃😃
Wendy
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dont know what number Iam but Im here
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Hi. I am joining as one more. I have been "lurking" here, and decided to jump in . I was originally DX with ILC in both breasts in 2011, then it returned in 2014. First to just lymph nodes. I still do not have any spread to a major organ, so for that I am very relieved. But it is in many lymph nodes in chest, pelvis, near colon, and recently in the last two months found a mass behind my eye in the muscle, and now a mass in my thigh. I had to have surgery behind my eye and am recouperating from that. We will have to do a scan in a month to see if that is going away. And now my left leg is swelling because of that mass. We will do either radiation or surgery to remove the mass in my leg based on what we find out.
I started on Afinitor. I had a bad lung reaction and had to go off that. Then I did Taxol, and then Faslodex. I originally had the estrogen receptor, but then the Faslodex wasn't working, so they did another biopsy and found that my cancer had mutated and now I am triple negative. So we are moving forward with just chemo, and I am on my 3rd round of Xeloda. This looks like a great place for support. My head is spinning. I will visit the Xeloda threads to see how people are doing on that. I am hopeful. I really think my eye and thigh progression started back in November/December when I was on the Faslodex and it wasn't working.
Just a note; I have a 20 year old daughter who had leukemia when she was 6. She is fine and in remission now, but the parent discussion boards on the LLS were a livesaver for me back then, so I am so glad to find another group to belong to.
Gay
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Dear Gay, Welcome to the community. We are so glad that you reached out and we know that you will experience support and understanding here. Stay connected and keep us posted. The Mods
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Welcome Gay so sorry for your current situation cancer is awful. I have as you before found so much support on these pages that I wonder how I would have managed before. Sending a healing hug to you all the way from Canada.
Wendy
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Dezymarie and Gay, welcome to the club no one wants to belong to! You will find tons of support as so many women have blazed the trail before us. Hugs to you both.
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I can be added to the list. Diagnosed November 11,2015 with bone mets right out of the gate. Oct 20 I broke my collarbone and X-ray showed it was nearly eaten through, the dr said it could be cancer and at that point I pretty much new it was and lost it..
I've posted twice on different subjects, but figured I may as well own it and post here. I read a lot of posts on here and find it very informative and comforting to know I'm not alone in this diagnoses.
No one I know has had bc and most just don't get the situation I'm in.
38 years old, 3 boys 9,7 and 1. I fight for them. Triple positive doing THP and I start cycle #6 a week from Friday. I also get my first scan since starting treatment that Friday. Already having nightmares that things aren't going well.
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Welcome to all the newbies! The more people that add to the discussion the better. Thanks Jeenee for your post too! Barbe, As time goes on some people will come around to getting it better anyway, others won't. You learn to weed those out of your consciousness. Wendy, of course you took it bad, no one likes to have any of this aggravation in their life. Ganderson, of course your head is spinning, you have been through a lot in this short time. I am glad your daughter is OK so you can focus on your well being. Bosco, I'm sorry you have found yourself here. Most people don't "get it". It is so nice to talk with people who do for sure. Keep on fighting for those boys and try not to stress too much about that scan. There are a lot of treatments you can use even if you find out things aren't going well. Many women have been here a long time!
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Hello, I was just diagnosed Stage IV after 4 very tough years filled with Lymphedema, chronic daily migraines, and Post Breast Therapy Pain Syndrome. My original breast surgeon lied when he said it would be "a tough year"!
But, I am so thankful for my amazing husband and two sweet kiddos. I was 38 at original diagnosis, 42 now. Thank you ALL for your support and information.
Erica
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Hello all,
Count me into the group. I am not sure what number I am on. I joined right this group right after diagnoses in October 2011 and then I just lurked every now and then. It's been 4 1/2 years. Very grateful. I wish everyone here for NED/stable.
Peace,
Jacque
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Jacque... 4 1/2 years is a blessing!!
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Hi all! I am new here. Just was recently diagnosed with mets to the bone. I am 34 years old.
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My wife recently progressed from Stage 2B to Stage IV after 2 years of NED. Mets to bones. ER/PR+, HER2-.Going to start Ibrance + Letrozole.
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steff and letmywifelive I'm sorry you find yourselves here but things do get better think of it as a kronic disease not a death sentence. The bone mets thread has some amazing woman and has helped me through many dark days. When I was diagnosed stage IV in June of last year I didn't think I would see Christmas ,now ten months later I'm fitter than I ever was and I feel great. One day at a time and keep the positive friends and family very close.
Wendy
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Thanks for the encouraging words. Looking forward for a better world for all of us here.
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Hi everyone. I'm truly a newbie. I was diagnosed Stage IV 6 days ago. I am 46 years old, diagnosed originally in 2/2014 with ILC, Stage 2b, with 3/27 nodes positive. ER+PR+, Her2-. My oncologist is completely confused because my Mammaprint showed <5% chance of recurrence. I did TC chemo voluntarily and had 100% receptor positive cells on AI's since chemo ended.
I've already changed from Aromasin to Femara and will start Ibrance as soon as it is delivered to my home Friday morning. I received my first Xgeva injection today. I am thankful for this site because I have been losing my mind since the beginning of March, when my oncologist ordered a bone scan because I had pain in my right side for 10 days without relief. I'm glad he listened to me and ordered the scan. I have at least 4 vertebrae involved, T2, T8 (where they did my biopsy), L4-5, and the top part of my femur. I haven't had any symptoms and all of my bloodwork had been normal (no elevated calcium or alkaline phos), so he said we wouldn't have known unless I broke a bone. I have a wonderful husband and a 9 y/o daughter I'm fighting for right now. I'm new to posting things, so I hope I don't screw this up. I really need to hear positive stories of women surviving more than the current statistics show. I need to be around to raise my daughter and hopefully grow a little older with my husband. Thanks.
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Hi DebK227,
Your story is so much similar to my wife's. She was diagnosed late February this year with mets to bones after 2 years of NED with Stage 2B. I have a 9 year old daughter too who I want to grow up with her mom. Getting all kinds of negative thoughts all day and finding it miserable to see my wife suffer. Fee awful for the child who has very little idea about what is going on and is happy and playing around.
She will be starting with Ibrance + Letrozole as well and already went through 10 round of radiation.
Have hope. Have faith. Medicine is progressing very rapidly and hopefully at a faster pace than Cancer.
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Hi LMWL Glad you made it here and already are making connections. Will try to write more when my computer is back from shop
. Healing wishes, Stephanie
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hi letmywifelive! I was so moved by some of your posts. My husband is having a hard time dealing with my diagnosis. I wish he'd visit this site once in a while to see it isn't all doom and gloom. My oncology nurse kept telling me yesterday how "lucky" I was to have bone mets vs some of the other possibilities. She said somany women are dealing with and surviving as if this is s chronic condition, not a terminal dx. It gave me hope for a longer life. We meet with my oncologist on Thursday, so I am compiling my questions daily. I pray for you, your wife and our children we can stay around long enough to see a cure. I am cautiously optimistic for the future.
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Hi DebK227,
Yes I have hope, faith in God and trust in modern medicine, but as you know with a 9yr old and uncertain future, life is very different. We also had so many questions for our onc when we visited her. Bone only is better prognosis no doubt but you need to constantly keep your watch on this disease. My wife is being treated at Stanford but we also took a second opinion from UCSF. We can not afford to take any chances.
Let us know how Ibrance + Femera is working out for you. I will also report. If you want, I will be happy to talk to you or your husband to share common thoughts and give courage to each other, if you like.
Btw, there is a thread called Mothers with school aged children that you can take a look at. It's kinda sad as we see a lot of scared people like us there, but you may be able to connect with someone you like who is in a similar situation.
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DebK227 and Letmywifelive, I was dx last May stage iv de novo with mets to my spine and started ibrance and Femara in June.. When I was scanned after 4 months of tx I wasn't clear if the therapy was working but my Oncologist said we are sticking with Ibrance and Femara. Now after 9 months my bone mets are stable and smoothing over and no evidence of cancer anywhere else either. There is a good bone mets thread and an Ibrance thread here in the Stage IV forum. Ask your questions there and you will get answers. Great group of women. And, it takes awhile to not feel like a dark cloud is hanging over you but it does get better.
Ellen
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I am here. Whatever number I am here, it is far too high.
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GoodbyeGirl hello I agree the numbers are far to high. Every time I go to the cancer hospital here in Vancouver I'm in shock as to how many folks have this. On the other hand it does give me hope that they are working towards a cure. I was diagnosed ten months ago and I feel better now than I did then. Never loose hope and when you 're scared come chat here lots of really great woman.
Wendy
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I am scared. It took a while to sink in. When it all started late December, I was busy with Christmas and then all the testing and whirl of appointments with so many specialists, and finally the beginning of treatment. Then "back to normal" life pattern and schedule and too much time for my mind to go to very dark places.
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