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!
17 years metastatic and still going s... - SHARE Metastatic ...
17 years metastatic and still going strong!
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KirkwoodDebbie
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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
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.
• in reply toKirkwoodDebbie
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
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!
I agree! Don’t ever let anyone give you a timeline only God knows. Keep fighting !!!! Deb
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 !
• in reply toLaura1314
You are amazing. You should do a u tube or write a book. Thanks for inspiring me. ❤️
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
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. 💞
PS it worked right away for me!
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?
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
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.
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.
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
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.
Alisonx
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.
Bless you for sharing. Long term survivors like you give us the newbies a lot of hope. X
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!
Wow that gives me such much hope that’s awesome.
Just saw this. Fantastic news and thank you for sharing. It gives me hope.
So wonderful!!!! Thanks for giving us hope
Wow what an inspiration!!
Your inspiring story gives me the hope to kick me out of the depression mode that keeps coming back.
Keep plowing through
So very happy for you. You give me the hope I need to continue down this road.
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
Sure, I get treated at Siteman Cancer Center in St. Louis, MO. It's a great place.
Thank you so much for posting your amazing story. It gives all of us hope. God Bless you. Keep on keeping on!!
God bless you!
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 ?
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.
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 .
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
This post just reassured me I’m in good hands at Siteman. Thanks for sharing.
Absolutely!
Dear KirkwoodDebbie, Outstanding! Thank you for sharing your story. It is so encouraging and so positive. We don’t all have this kind of experience and it couldn’t have been smooth sailing for you the entire time, but your outcome provides hope for us all! So happy to hear you are testifying on behalf of a medicine that you feel is doing it’s job for you. The FDA needs to hear more from patients. Best of luck to you and thank you for sharing!
Hello, thank you for sharing your story, I was diagnosed 5 months ago and I’m now suffering serious depression. Did you go through this initially? Do you have any tips or ideas of how you have done so well. Diet or supplements? Exercise regimens? I’m 42 with two young children I really need to snap out of this grey mood that seems to have overtaken everything. Your advice would be gratefully appreciated X
It is VERY normal to be depressed at first. As more time goes by you will barely think about it. I really wish I could give you tips on how I've survived Stage 4 for 19 years. I did Juice Plus supplements for 8 years, but after I stopped taking them there was no difference. I do exercise a lot, but I go out with friends, drink lots of wine & keep living life! As corny as it sounds, a positive attitude helps wonders. I feel great & that helps a lot. There are SO many new drugs coming down the pipeline & that keeps me going. There is way more reason to have hope that not. I hope that helps! 
Thank you for your reply, do you eat meat and dairy? I’ve become so paranoid about what to eat! What exercise do you do? I have mets in my spine so I was worried about what I can actually do X
I do eat meat & dairy, I actually don't worry about what to eat. I used to, but I never noticed any difference. I turned 60 this year (I was 34 when I was originally diagnosed!) so I'm always trying to watch my weight by eating more fruits & vegetables, I would love to lose 10 pounds. My mets have been pelvis, chest wall, liver & lung, but not spine. I do Zumba & Pilates, but I would ask your dr. what he thinks you can do. Walking is always good. I did 6 of the Komen 3Day walks in the 2000's & I think that all the walking & training helped me. I feel stronger & more able to fight the cancer when I'm working out!
Thank you for your reply, have you ever been NED? I’m recovering from having rods put in to both of my femurs so exercise is limited at the moment but I hope to be able to step it up. I was running all the time before this came back. I’ve lost so much at the moment, my job, my allotment, my running. I was in bed for 3 months before my operations and for a good few weeks since. I have two daughters age 5 and 8. I’ve found being so ill that I’ve not had much contact with them has been really hard now I struggle to engage with them because they don’t know my diagnosis and I haven’t told them as we have no idea how long. Your story has really inspired me and also to hear that you feel good and are still very active. When I look to a future of prescription drugs I’m full of fear, I have always been very natural. I haven’t drunk since my first diagnosis in 2016 as I had thought it may have contributed to my illness. Have you drunk wine throughout your treatments? What are you currently taking? Have you progressed gradually or did you always have mets in your lungs and liver? I’m bones, lungs and liver. Thanks for chatting with me X
• in reply toToomanyquestions
Hi Ellie,
When I was diagnosed I was worried about my diet too. I still worry at times, but I try not to obsess over what I am eating. I ate a healthy diet before, but I had a really sweet tooth and I needed to cut back on that, as well as some processed food. So I cut out soya, as two hospital pharmacists told me it could fuel oestrogen (they didn't say for sure) and I cut way back on sweets.
I have adapted a lot of the recipes I like and make them myself now (In the past year I've made a chestnut cake, raw vegan carrot cake, Ferrero Rocher, bliss balls and other recipes) so that I don't feel like I am depriving myself and I know what has gone into the recipes. I still eat dairy, but not all the time and I also eat eggs, provided they are free range. There are a lot of farms in the nearby villages where people keep chickens, so I always feel confident buying from them. As for meat, I have never been a big meat eater anyway, but I do like to have some organic chicken sometimes, or a little bit of beef. Meat doesn't make up a big part of my diet, but that's more down to preference than worries about how it can affect the cancer.
Have you spoken to your GP about exercise? I was scared to do any exercise apart from walking in case I broke a bone. So I asked my GP about some possible safe exercises and she suggested swimming or cycling. Right after my diagnosis I went swimming, but that wasn't a good idea, as I was exhausted afterwards and slept for the rest of the day. I had pushed myself too hard, too soon. It put me off swimming for ages. In fact, I've only been swimming once since then and that was when I went to Iceland in January.
So I put my thinking cap on and decided to wait a while until my body had adjusted to the treatment and I was feeling stronger. Then I decided it had to be something I could fit in with my work, that I would enjoy and wouldn't feel like a chore.
I started using the outside gym in a nearby village between dog walking appointments in November and I have been going regularly ever since. I love it! I started out with three 15-minute workout sessions each week, and then each week I would increase the time by 5 minutes per session until I was doing 30 minutes three times a week. I am now thinking of adding a fourth day. I just have to look schedule and fit it around my job. I was scared of using the machines at first, but the weight bearing exercises have actually made me feel stronger. I think the key is to be gentle, take things slow, listen to your body and to not overdo things.
I would suggest you look at doing something that you enjoy, and is manageable for you. Don't push yourself too soon though, but listen to your body. Maybe you can start off with a short walk, and then take it from there. But I would start off by discussing this with your GP first before you start anything new.
Sophie x
Toomanyquestions• in reply to
My GP is rubbish! I tried running the other day, physically I can just about do it. The surgeon said light jogging would be possible. I managed about 50m at a snails pace (I could run 8 miles before). I’m just today beginning to realise that I might achieve a normal life again - well not running 8 miles but I am 42 so at some point I wouldn’t have been able to keep that up anyway! This post about 17yrs couldn’t have popped up at a better time. I was so depressed yesterday. Actually now I’m thinking well the rest of my body is in fairly good shape so why not try to build myself up. Whereas before I was thinking what’s the point! Will you remind me of this next time I’m miserable on here! X
• in reply toToomanyquestions
I'm sorry to hear that you don't get on with your GP. Do you know what I would suggest? Get a new GP! Whenever you have an appointment come up, just try to schedule it with another GP at your practice. When my usual GP isn't available, I see one of two others, but I prefer to see my own. The other two are nice, but they are men and just want to get right to the point of why I am there (which isn't a big deal), but I also like to have a bit of a chit-chat. I asked one of the male GPs about contraception right after I started treatment, as I didn't know how long it would be before my ovaries stopped functioning and I didn't want to risk a pregnancy after coming off the pill. He was embarrassed! I wasn't expecting that kind of reaction! I just thought doctors have seen it all and heard it all.
Wow! Eight miles!! I wouldn't be able to do a single mile. I don't have the stamina for that. But I can walk for miles at a time, and I enjoy using the gym. Even at school, I was terrible at relay running, cross country and anything like that, so I am impressed that you are a runner. I'm sure that if you slowly build it up you might be able to get back to doing that again.
I shall try to remember to give you a prod when you are feeling down! x
I am so sorry to hear about your struggles with all of this. I have been VERY fortunate that although I've been Stage 4 since 2019, I have had very few troubles. Once you get past all this it will be SO much easier to be positive and in a happy place. I totally trust in science and my oncologist, so I have never had a fear of the drugs. I've been on many clinical trials & I've been on chemo since 2017 (before that was hormonals only). I usually get about a year before progression and move to a new drug. I have lost my hair 4 times in 26 years, but I've had my hair for 4 years now. I drink more wine now that I ever have, not sure if that's a good thing, and as we know, everyone is SO different. Wine with friends is my one vice :). I was on the same drug (Neralynx/neratinib for HER2+) for 3 years. I just found out I have a spot on my lung that has been growing for the 1st time, so I'm switching (hopefully) to a new clinical trial that's opening where I go (Siteman Cancer Center in St. Louis). It's supposed to be similar in side effects to Kadcyla/TDM1 which I took years ago & wasn't too bad. As long as I'm feeling good, it's so easy to be positive. I feel for you & understand how hard it is to be positive when things aren't going well. My son was 4 when I went from Stage 2 to Stage 4. Hang in there, it will get better!!!
Hi Kirkwood Debbie, your journey is an encouraging and wonderful testament of hope and confidence for all of us particularly Her2+ MBC survivors like.
Truly Inspiring !
I am nearing 4 years now since my diagnosis in 2015 . Have been on Herception & Perjeta on 3 / 4 weeks cycle.
My Doc does mention Neratinib as the next future treatment. However I hear it could have Diarrhoea problems. One Doctor also said thats it's benefits are in question.
Would like to hear from you on your 3 year experience with Neratinib.
Thanks and wishing you many more years of happy living.
thank you for sharing your wonderful news. It gives hope to those of us on this cancer journey. Cheerio, Madlyn
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