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!

29 Replies

  • 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

  • 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.

  • 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...


  • 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

  • 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!

  • This is so good to hear, your an inspiration!

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

  • 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

  • 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!

  • Thanks for the encouragement hugs!

  • 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!

  • 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

  • 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!

  • 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

  • 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.

  • 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.

  • 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.

  • 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.

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

  • 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!!

  • 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.

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

  • 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.

  • 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.

  • 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

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

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

  • 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.


  • 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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