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17 years metastatic and still going strong!

I'm a 24 year survivor with 17 years at Stage 4 and still going strong! The cancer went into my bones in 2000 and in my chest wall and liver in 2007. I was on hormonals until 2007 and then switched to chemo. I have been on a new chemo about every year and 1/2 on average. I did Proton Therapy on my liver spot 17 months ago and that worked well. I am on Neratinib now and am getting ready for a trip to Silver Springs, MD to testify to the FDA on behalf Neratinib. I am SO excited! My quality of life is wonderful. I take one day at a time and never lose hope!

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KirkwoodDebbie, that is amazing!! It's inspiring to hear that you're doing so well. Just out of curiosity, what was your original diagnosis? Be sure to let us know how your testimony goes! xoxo

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My original breast cancer diagnosis was in 1993 with cancer in 3 of 21 lymph nodes (I was 34 years old). It went into my bones in 2000. Long, long story after that as you can imagine! That's a good idea, I'll post after I get back from the FDA.

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Hi, Awesome!!!! It's so inspiring to hear that ur going good after all these years. Please let know the detail of your therapy as my sis 34, has triple negative Breast cancer, Left side July '16 and now April '17 on the right one. I believe your treatment and knowing more about it can be of great help to us. Thank you and God bless...

Harry

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KirkwoodDebbie,

Congratulations on your success with dealing with Stage 4 BC for all those years!

Can you tell me what kind of drug Neratinib is? Is it a chemo drug or anti- hormonal drug? Or is it a targeted therapy drug? First time I hear of it. What type of BC do you have? What subtypes?

So happy for you! Keep us informed. Kats3

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Congratulations on continuing to deal with MBC for so many years. You are an inspiration to us! I've heard of neratinib, which is a targeted drug. Which clinical trial are you in? What is the purpose of your FDA testimony? For acceleratated approval? Let us know how it goes and good luck!

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This is so good to hear, your an inspiration!

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This gives me much hope. God continue to bless and keep you.

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Thank you for this story of hope. I was diagnosed with stage 4 in bones and liver in Sept. Was given 6 mos which was knocked down to 2 in Nov. I am continuing harsh intense chemo regimens praying for time. I will keep your story active in my mInd as i fight

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Don't EVER give up Aelgersma. God makes the decision of when it is our time to go. I have Stage IV MBC and have had for 3 years. I have a friend who was diagnosed with Stage IV Colon cancer at age 34 and given less than 6 months to live. That was 4 years ago and he is CANCER free!! God is good. I am doing good right thing now and am thankful for each and every day. Be positive. I know it's not easy, but, I think that a positive attitude goes a long way. I'm not ready to die yet. I'm going to keep on fighting!

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Thanks for the encouragement hugs!

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I agree! Don’t ever let anyone give you a timeline only God knows. Keep fighting !!!! Deb

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I was diagnosed with stage iv breast cancer in jan 2013, with mets to liver, bile duct , spine and bones. Was told to things in order and I had about 3-6 months! I’m now at a little over 5 1/2 Years . A positive attitude is a must , my doctor says that’s the main reason I’m still going strong. Yes it’s been a roller coaster, up and down and change in meds but there are so many different medicines and/or combinations to try! I’ve changed several different meds when scans show something or tumor markers rise. Doctor watches me very close. But still enjoying my life , yes tired some days or feeling off but doing good! As always stay positive it does work !

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U r amazing!!!! I am inspired by your post that this disease does not have to be a death sentence, a struggle yes, but always hopeful! Thank u and may u continue to be well!

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Wow thanks a great story I hope I can get myself there. Just another setback for me with the lungs been in hospital now for three days feeling better now just hope and pray new chemo works for me

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Don't ever give up Anneespo. I have been battling Stage IV MBC for 3 years now and attitude means a lot. Yes, I do get down sometimes for a couple of days, but then I realize that there are people worse off than me. What new chemo are you taking? God Bless you. You are a strong lady. You can do this!

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I just started Halaven I am going to do my second treatment this week. Just got out of hospital yesterday the cancer is causing loss of breath and a nasty cough so now I am on steroid therapy to hopefully get me through the chemo. Pray this chemo works

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Halaven is great. I was in a clinical trial on it when I was diagnosed in 2015. You could either get Taxol or Halaven as first line of chemo treatment. They believe getting Halaven first works better in the long run. I didn’t have any side effects other than losing some hair but not all of it. Good luck to you and many hugs and prayers. 💞

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PS it worked right away for me!

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17 years at Stage IV? You are an inspiration. I have stage IV as well and get so down sometimes but seeing that others can survive for a long time gives me inspiration. I hope in your testimony you can touch upon the ridiculous costs of these meds that keep us alive but broke.

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Yes, I am on my husband's insurance which is pretty good, but I still pay $3,000 to $4,000 per year out of pocket and have done so for years. It's costing me a lot to stay alive this long! It has really put a dent into what we can do.

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I'm on my husbands good insurance as well, but also went on disability when I couldn't work anymore. Now the government tells me I HAVE to go on Medicare after 2 years. This is ridiculous when I have my own private insurance that my husband worked so hard for.

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That is ridiculous. This insurance is trying to ruin people's lives. If this new healthcare plan goes through we are all going to be in trouble. I'm praying that it doesn't. I to am on disability and am divorced. I get Medicare and Medicaid because I only get 923 a month disability social security. My ex husband is supposed to be paying me 1200 a month in maintenance but he is over 26,000 behind so I am barefoot making it as it is.

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I'm sorry to hear that Cowgirl. Does Medicare cover most of your medical bills for cancer?

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Yes, fortunately it does. I only have to pay anywhere from $0-8.35 for prescriptions and no co-pays. I don’t know what I would do without it. I sure never thought that I would be on welfare though because I have worked from the time I was 16 but thank God it is there for me. I’m not sure how it is now, but I am pretty sure that you can use Medicare as your primary and your husband’s Insurance as secondary. Be sure to check on that. Good luck. #dontgiveup

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I work for the govt in the debt collection area. They should be garnishing his wages at this point that is awful. Prayers and Hugs your way. I hope it doesn’t go through as well.

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Thank you so much for your inspiring story. You give all of us hope and determination. Now I realize, even more, that there is a great reason to keep fighting. God Bless you. Thank you for sharing and keeping Kicking Cancers Butt!!

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Thanks for the encouragement. It's been 2 years for me. Tumor markers have gone up and will be getting Ct and bone scan next week. Hoping all will be well.

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Congratulations! This is wonderful news and I am so happy for you! Keep that positive attitude...It truly helps to get through each day!

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Thanks for posting your story. It is quite inspirational and gives me hope to be a long term survivor of MBC. I am approaching my 4 year metaversary and hoping for many more.

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KirkwoodDebbie /Sister/YEEESSSSSSSSSS Warrior: You are a true inspiration to the many women who are struggling with this disease, and worry daily about their mortality.May our Creator grant you many more years to fight for yourself while you are also helping other women to fight , and have hope/faith.

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Great news - what an inspiration just as I needed it. Am on Xeloda but have had CEA going up all the time with nothing showing on bone or CT scans. Now the Ca125 is also up a bit so my oncologist sent me for a brain MRI this week as that was the only piece of me not scanned lately! Terrifying not only because of the implications but I am seriously claustrophobic and after 2 previous MRIs (totally unrelated to the MBC) I didn't sleep for days before this one! Fortunately the MRI ladies were terrific (as was the dormicum!) and the scan showed nothing more than severe sinusitis - again. Now on antibiotics and off the xeloda till that is clear. Don't feel too confident being on no meds after 4 years of one or other medication but trust the oncologist and hope that the rising markers can be attributed to the sinus inflammation as otherwise we are all at a loss! You have proved that all things are possible - God bless

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your story is a reminder of the hope on this JOurneY.

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Totally agree, a reminder of hope for our journey. I believe there's more out there, I wish they would share their stories. Bless you all

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Wow what an inspiration thank you so glad to see you have done so well for so long👍

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What a story of inspiration xx ty for sharing it with us. I am five years since getting secondaries, was on aromasin, faslodex and when that failed, i had chemo for the first time, as i didn't get it before, long story, i finished that in Feb this year, results where a mixed bag, 2 of the buggers near my sternum shrank to half their size, the other one increased in size, the tumour in my lung only shrank a little. Anyway, first time in ten years that i am not on meds, its nice not having all the awful side effects, but worrying all the same, having a scan in the next couple of weeks then results when i get back off my hols mid July, so its the waiting game again, but a positive attitude is what i try to stick to and it does help.

Alisonx

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I had to go on Medicare and have it as primary, too, but that really has been okay. We've never had enough medical expenses to itemize it on our taxes. Ironically, my husband's insurance only covered us until he retired, but then we were able to go on a supplemental policy thru my final employer and are paying less for better coverage. Who knows what will happen with the latest crazy changes being proposed in the tax revision. For those without access to employer provided supplemental insurance, I have heard good things about the UHC offered thru AARP. We have to be 50 to join AARP and I don't know whether it will cover for those who go on Medicare due to disability. It's a shame that sick people have to deal with so much red tape about insurance.

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Bless you for sharing. Long term survivors like you give us the newbies a lot of hope. X

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I'm so glad to give hope. It's been a LONG, crazy journey, but my 25th cancer anniversary (from original diagnosis) is this Saturday :). I'm still doing well on neratinib (Neralynx). I've been on it through compassionate use for almost two years. A record breaker for me. Yay!

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Wow that gives me such much hope that’s awesome.

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Just saw this. Fantastic news and thank you for sharing. It gives me hope.

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So wonderful!!!! Thanks for giving us hope

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Wow what an inspiration!!

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Your inspiring story gives me the hope to kick me out of the depression mode that keeps coming back.

Keep plowing through

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So very happy for you. You give me the hope I need to continue down this road.

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You are truly an inspiration to all of us. God bless you. That is so exciting that you get to testify for the drug. Can I ask where you’ve been getting treated.

Take care!!!! Deb

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Sure, I get treated at Siteman Cancer Center in St. Louis, MO. It's a great place.

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Thank you so much for posting your amazing story. It gives all of us hope. God Bless you. Keep on keeping on!!

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God bless you!

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Hi Debbie. You and all the women here am such an inspiration. Today I have read so many great stories and also came across yours from a year ago, I believe. How are you doing ?

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I'm doing great - thanks for asking! I have been on Neralynx (neratinib) since March of 2016, a total record breaker for me. At the moment I don't look or feel like I have cancer. I've lost my hair 4 times in 25 years & haven't cut it since the last time I lost it & I'm loving my long hair. I feel very blessed and hope & pray the same for all others in this chat group.

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Wow so great to hear you are doing well. Really hope the same for all of us here as you mentioned. We are blessed to have so many medications out there that can keep us here , for a very long time. When you hear such results as yours and others it gives us more hope and strength. I pray that you continue on this healing journey for a very , very long time .

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That is very encouraging to hear, KirkwoodDebbie! Your story is a real inspiration, especially for someone like me who was only diagnosed 5 months ago. When you initially hear your diagnosis, and then the prognosis, it can be really scary. You think that you do not have much time left. I was reassured when my oncologist told me I have "many years" ahead of me. I wasn't sure whether she was just trying to make me feel better after she dropped the bomb, or if she was basing her statement on fact. But I am inclined to believe her. Besides, as time goes on, science is able to improve treatments, along with the lifespan for those of us whose disease is metastatic. Having a positive attitude is a definite must! That's how I feel too.

All the best,

Sophie x

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