I'd like to hear from you wonderful ppl about experiencing this type of cancer! I've been more or less told I have little time left. I'm scared!! I will be on chemo, once every 8 days for two weeks, then off a week, and then start again. I'm told each different time my treatment is changed it will work less time than the previous treatment until none, not at all....
Coming Home with Triple Negative Results - SHARE Metastatic ...
Coming Home with Triple Negative Results
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Jaxon2007
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•
I am so sad to hear this. I honestly don’t know anything about this type of cancer. I am sending love your way and hopefully somebody here can help.
Jaxon2007• in reply to
Thank you
Hello Jaxon,
I do not have triple negative breast cancer. However, I do want to let you know that when I was researching immunotherapy recently I was told by the hospital that this form of treatment is being offered to triple negative patients. Please have a look into this and perhaps mention it to your oncologist, who may be able to provide you with further information that could help you. Or maybe there is a trial you can try. Please don't give up! I hope that this helps.
All the best to you,
Sophie ❤
You are pretty remarkable for having the strength to log on and post after being given this news. I have no experience with triple negative. There was a triple negative phone session sponsored by SHARE two months ago. If you call the SHARE hotline, they may be able to give you information and somebody who is going through what you are. I hope each treatment lasts a very long time. I wish I could offer more and just sit with you as you go thru this.
definitely look at immunotherapy - the most advanced immunotherapies i believe are for tnbc. ask a few more people!!
I don’t have experience with triple negative but I know there are options! Have you gotten a second or third opinion? Dana Farber dana-farber.org/breast-cancer/ is excellent! Angel Flights and Corporate Angel Network offer free flights for cancer patients. I use them when I have appointments at Dana Farber.
Sending ❤️!
Forgive me, I am also new to this site. Are you TN MBC or early stage? I can’t offer much advice, bc so new for me, but I am TN MBC. I want to be sure you have been tested for the BRCA mutation. Sorry for you diagnosis.
I'm stage 4, just overwhelmed now...
I hear you. I can’t see straight. Hoping we both find the right protocol. I was Dx in April 2015 Stage 3c. Multiple tumors. Two were TNBC (tiny) and one was 2cm ER/PR+ (these spread to the lymph nodes. 2 weeks ago my markers were up and that was it. Last week biopsy showing TN MBC. I feel like it doesn’t make sense but I guess this never does. I am BRCA 1 + so they are putting me on a PARP inhibitor. Interestingly enough I took this drug as part of a clinical trial from 4/16-4/17. Hoping it works. Good luck to you.
good luck to you too
I'm very sorry you have been given such blunt negative news. Are you now at MD Anderson? They should be good there. I took a quick look at your last 2 posts to get a picture of your cancer. Does this mean you now have two types of MBC? It's true that immunotherapy trials are running for Triple negative. Have an honest conversation (call them asap and insist on a phone call with your doc) before you start the new chemo, to see if this is a viable option. Also I would seek out with your doctor's help, a social worker to help you process what you have been told. Do they have them at the hospital? It's a lot to take on news like this. Sending you much love and good wishes and a guiding light.
Hi Jaxon -
First, I'm so sorry for what you're going through, truly.
I also want to share some information that might be encouraging. I have MBC, not triple negative, but my SISTER has triple negative metastatic BC. She (and I) were originally diagnosed in January 2010; she Stage I and me Stage 2b/3a. Then we were both diagnosed metastatic in December of 2014. Her prognosis was of course worse then mine, given the triple negative status, but I'm here to tell you she's doing great -- four years later --and I'm pretty sure she'll outlive me (but I'll give her a good run for the money!).
The one thing that she does that I'm convinced makes all the difference is simple EXERCISE. She walks for probably 10 or more hours per week. Sometimes it is a normal walk, sometimes a very slow jog, and sometimes something in between which I call a "wog". And while of course we all have (and deserve) our times to fall apart and rail at the universe, my sister is mostly stoic, moves ahead with her day to day life, without too much fuss.
I mention this because, for my own treatment, since the beginning I would do whatever I could that might make some small, hopefully meaningful, difference, e.g. vegan diet (made me feel better than I had in years!!!); carrot juice twice a day; rest whenever I need it (my meds cause severe fatigue); lots of water; etc. And I'd ask myself "okay, what ELSE can I do?", without going overboard.
Then, as my sister kept doing amazingly well and I seemed to be having some downward slope, a lightbulb finally went on that, wait...maybe it's the exercise! I mentioned this to one of the nurses at my hospital, who ALSO has stage IV bc, and she said that the doc who treats her said "30 minutes of exercise a day is as effective as chemo....I don't know why we give people all these drugs but don't make them exercise". That did it for me and so, for a solid week now (!), I've been walking/wogging for 20-30 minutes. I plan to keep expanding this, since what sets my sis apart is that she'll do this for and hour or two....I'll get there eventually.
Anyway, saw your post, thought of my sis, and thought I'd share something that I think is probably the single most effective thing you can do beyond follow doctor's orders! And, of course, it helps the body and mind in various ways, so, like, why not?!
Be well, I do wish all the best for you..... Lynn
PrestonParker• in reply to
Hi. I just read your post about your sister. I can’t believe it. If you don’t mind me asking, was her original MBC diagnosis visceral? Or just in one spot? I was diagnosed 11/6 with several locations, tiny but all over. I’m out of mind. Does she have a BRCA mutation?
• in reply toPrestonParker
Hi PrestonParker -
Gosh, I really am sorry for what you're going through...
Re: your questions...
Her original MBC was bone, but then about a year or so (?) later it spread to her right lung. She had a "wedge" of that lung removed in the spring of 2017. Then it came back in that same lung, and she just had another portion of her lung removed in early October of this year. Now, if you meant that literally, above, "I can't believe it.", then brace yourself: She finished the NYC marathon on November 4, four weeks and two days after her surgery. I saw it with my own eyes.
And, no, as surprising as it was to both of us - and our docs, we don't have a BRCA mutation, but the doctors say that this is almost certainly a genetics-based cancer because the odds of the two of us, the only girls in our sibling set, both randomly getting BC before the age of 50, are slim to none...so it is almost certainly a gene, just not a gene that they've figure out.
As always, I'll acknowledge that I might come across as overly optimistic and perhaps unrealistic but that is because a) I am pretty optimistic ( 
), and b) I'm always excited to know that there's something...anything...I can do to possibly make a difference or put a dent in this disease. Prior to the exercise epiphany, I was in a rut, doing the best I could w/ diet, rest, attitude, but still had more progression (this is me now, not my sis..), and then when I realized that there's this whole new category of things I can do, and I have good reason to believe that they might help, and I KNOW they won't hurt, I was thrilled. Ordered running shoes, and I feel great...encouraged, and hopeful...
Take care,
Lynn
PrestonParker• in reply to
Thank you for this. I hope to one day be as optimistic as you.
PrestonParker• in reply to
Do you mind me asking what treatments your sister has had over the years?
• in reply toPrestonParker
Hi PrestonParker...I'm so sorry to have missed your question! I come back to this site on and off, and when I do, I sometimes jump around topics just to quickly catch up and miss important things in the process...Anyway, your question re her treatments...
...My memory is sketchy, so please let me know if you'd like more detail and i'll get the specifics from her ...
When we were first diagnosed (2010), I did "ACT" chemo, but she did two of the three, I think because she was considered stage one, but I was stage 2/3. So I don't know if she did AT, or AC, or CT, but something in the oatmeal that is my brain says "AT".
No meds/Rx's after that...
...then, when diagnosed metastatic, she did some sort of chemo infusion, I want to say it included the one she hadn't done earlier (A, C, or T)...So that was four years ago.
Since that time, she has taken no medicine or treatment of any type. Just scans every 3 months and then surgery to remove the tumors that have appeared in her lung. But her doctor (at Duke) is talking to her about immunotherapy, which would be very exciting...
I hope that helps...and, again, I am so sorry for the long delay!
Best, Lynn
PrestonParker• in reply to
No worries! Nice to hear you are so engrossed in living that you are not obsessing over this site - like I am 😜 thanks for this. Best of luck to you both.
Please ask anything you want to, maybe we can help each other. My sister was on an infusion of zometa, oral Ibrance and fasoldex and letrozole injections. Cancer continued to spread. She went to MD Anderson for pain relief via radiation. She had no other treatment for a month. Now she is on infusions of Zometa and Xeloda. We had doubts that the Ibrance combination treatments were working as her hair started to get really thick in the back. She has lost all her hair now after just two treatments of Xeloda and her liver has shrunk which new oncologist says thats a good thing...Maybe a scan in February...
Her original diagnosis was spots on her spine and hip. 60 spots on her spine 
Her Amarillo ongologist would not do a scan on a regular basis so this was discovered by a bone density test. Wrong treatment started, which of course we didn't know at the time, so the scan a few months later showed cancer had moved to her liver. No, she does not have a BRCA mutation... Praying for you too...
Barbteeth• in reply to
Hi Lynne
I’m going to do more exercise after reading your post
My excuse is pain from bone mets but with strong painkillers I’m able to do more..maybe it will reduce pain in time..but as you said it’s the feel good factor as well
Your sister is doing amazingly well
Love to both
Barb xx
• in reply toBarbteeth
Hi Barb! Thanks for your response! I have two thoughts...
First, wanted to share that I, too, have widespread bone mets, so one of my "mantras" has been about making my bones "impenetrable", so of course I'm all about my calcium and I splurge on plant-sourced calcium, since I've been told that it is much more easily absorbed by the body. ANYWAY, as I was experiencing this exercise epiphany re: my sis, I realized that weight-bearing exercise -- like walking, jogging, certain weight-training -- is a great way to strengthen your bones. So it gave me even more reason to start "wogging"!
Also, LADIES, as I was researching the effect of exercise on cancer I came across a program (in partnership with LiveStrong) that gives people with cancer 12 weeks of free membership at their local "Y", along with twice-weekly personal training! I'm definitely going to do this and focus my training on bone strengthening, plus I'll get in some nice pool time.... Here's a link...(do links work on this site?) livestrong.org/what-we-do/p...
I want to also acknowledge that, yes, we are fighting a fierce enemy and our sliver of control is small. Will things like this make a difference? I don't know, but I think they might, and they won't hurt. I want to make my body as unfriendly to cancer as possible. The small difference it makes might accumulate to really make a difference or tip the scales at some juncture, increasing my quality and quantity of life...
Take care, Barb...I do hope your pain decreases and you do well!
Lynn
Barbteeth• in reply to
Thank you Lynne..you are so eloquent how you express your feelings
I wish I could be as forward thinking as you..I’m a bit fed up of myself at the moment..had a ct scan today..it brings it all back into focus again..get results on Wednesday so not long to wait
I’m going to get on my horse tomorrow..painkillers at the ready!!!
I find having little treats can help..makes me feel so selfish..haha
So a massage tomorrow
I take those Ad-cal tablets for bone strengthening and get xgeva injections..have a fractured vertebrae and rib
I wish you well
Barb XX
13plus• in reply to
Lynn, I loved reading your posts here. I'm sorry that you and your sister have both been inflicted with this disease and so young. How interesting the timing you have both had with the stages even though you have a different types.
I LOVE that you are seeking to do whatever steps you can take to improve your odds at living longer. And I REALLY love reading about your "lightbulb" moment re-exercise. So true! Exercise helps all of us in every single way. No pun intended but it keeps our bodies agile and keeps everything flowing through us...blood, oxygen, nutrients, lymph fluid, pharma (!), and all the toxic stuff back out. I LOVE that your sister ran the marathon and so soon after her lung surgery. Truly inspirational! I had a friend years ago with multiple myloma and he started a team charity that runs the same marathon. It's a great cancer charity still running in his honor. Your sister should check it out, she
might want to join in their other races. They provide fantastic support and doctors are part of it too.
I myself teach the Livestrong program and highly recommend it Thank you for sharing the resource here! It's free folks!
Love to all,
Jaxon2007• in reply to
Thank you, just saw this
MMMP• in reply to
Yes I agree with the exercise piece- I stay as active as I can three times a week strengthening and cardio- in the winter I curl and golf in the summer! Have neuropathy in my feet so had to get bigger shoes!!! Plus I get a massage every 2 weeks!! By the way- I’m TNB!!!!!
Many prayers to u! I wasn’t given much hope either in the beginning! And her I am 2 1/2 years later with normal TM numbers! New meds especially with immunotherapy are coming available all the time...but especially with first visits they totally overwhelm u with the negative...exercise and diet changes will help u feel better physically!
Blessings and Happy Thanksgiving and many more to come! 🙏🏻💕
Do you too have Triple Negative
No I was triple positive then Pr-...3different subtypes...so God only knows what the bone mets really are...lol!
Dang, I was originally Hr positive Her2 negative, but like you say who knows
No experience with this type of cancer but sending you comfort and peace in dealing with this
Thank you, just know Texas Oncology in Amarillo treated me for 1 whole year for the wrong type of cancer simply because of arrogance refusing he could be wrong and I could be right and lack of doing scans. Not because of money as I had great insurance. My fault too for not seeking another oncologist....
Ugh, Jaxon. Shame on him! Please don't beat yourself up over this. When we find out we have this SOB disease, most of us do whatever we're told (unless we have the benefit of a close friend or family member who has inside info) because we are in such shock. THEY are the professionals, you are the patient. I hope you have better care now. And the caring piece is as important as the medical care. You've gotten some good info here. I'm going to get on my elliptical. Please let us know how are are doing as you go thru treatment.
I will keep you updated
Don't spend any energy beating yourself up! Nstonerocks is right. We put trust in the doctors as they have the training. (If you're up to it) I would report him for his neglect.
Better yet, look forwards and upwards, it's a new fork in the road. There is encouraging news from others here with triple neg.
Not on any treatment yet and don't go back to md anderson until feb. Don't know what they are planning, they told me they would get back with me....
Perhaps you should follow up with a phone call to them in about a week? Otherwise there's no plan until Feb, that seems odd. They don't intend to send you back to the original doctor do they?
MD Anderson said to find a different oncologist in Amarillo. The only other is BSA, which I have several friends that have used doctors there with success. I hope its not like they can't do anything for me and are brushing me off.
surround yourself in God’s care. Only HE knows how long you have. I have several friends with triple negative who are doing fine. You gave to go through some hell to get to a better place, but you aren’t alone and you can do it. Stay as positive as you can in your thoughts and actions. Get on an anti-anxiety med. I was dx Mets to lungs in 2016 and no one thought I’d last a year. I’m still here doing better than ever.
Greetings sister, and yesssssssssss warrior: I was misdiagnosed in October 2006 with a visible lump in my breast. I was finally correctly diagnosed with triple negative stage II metastatic breast cancer in 2007 almost a year later.I then had two lumps, and 10 of my 12 lymph nodes that were biopsied were invaded by cancer. I was told by the oncologist that treated me, that I would not live to see 2009, even with the aggressive chemotherapy, and radiation. I wasn't crying though secretly most of my loved ones were. I was preparing to go home to the Lord, but every three month blood marker test, and scheduled scans kept coming back negative for yessssssssss years. Suffice to say no one, not even a 38 year experienced oncologist who didn't believe in God can tell you when you will cease to live/exist in your physical body. 10 years out of treatment, the medical doctors are still thinking I am some great exception to their worldly rules. Well I believe God is my ruler, my protector, my comforter, and my provider. I believe God lives, and has sovereign power, and dominion. If I should physically die tomorrow, I just pray that God will accept me when I reach the pearly gates of heaven where I will have eternal life. I am grateful for the 10 years of milestones I have experienced with my loved ones that an Oncology expert said I wouldn't have. Gods grace and mercy abounds. M-I-R-A-C-L-E Yesssssssssss. My sister(s)/warrior(s) keep the faith, no one lives forever in this physical body, but do live your best life while you are here on this planet we call earth, and do try to help others along this journey. Amen. May God bless us all to have a Happy- Happy Thanksgiving XoXoXoXoXoXoXoXoXoXoXoXoXoXo to infinity
Thank you for this reply.....I really needed it...It's odd to say that we have never met and will never meet, but yes, I love you, and may God keep smiling on you and me and all of us fighters....Happy Thanksgiving and I will be wishing you the same next year and the next and the next and the next.........
Thank you for this. It does give hope. May I ask what treatments you have received for TNBC?
Greetings: Warrior I had aggressive Chemo, and radiation 11 years ago. There was nothing else available to Triple negative sisters/warriors back then, but God was always available Amen. By Gods grace , and mercy I am still standing , and still on this journey we call life on earth, as I pray to here more testimonies from other sisters/warriors.
That’s wonderful. Were you metastatic?
yes
Do you mind me asking where else in your body’? And what treatment are u on now? Thank you.
How awful for a doctor to state a prediction like that. I am soooooo glad you got to prove him VERY long. And that is fantastic you are doing so well. Keep up the positive spirit and celebrate every day!
Wow! You have lived the last 10 years without treatment? Do you do scans?
I am due for a sonogram, and blood work with tumor markers.
I pray all scans and blood work come back good. I have no doubt they will. You are an inspiration to all of us newly diagnosed with this dreadful disease.
I'm a little late to the post. The cancer in some parts of my body are/were triple negative although originally her2-. I appreciate your spirit and any thoughts to live well.
With God all things are possible. I love you with the love of the Lord/God Amen. Enjoy your Thanksgiving.
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