Triple Negative Stage IV
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Texas- You will rock it! No worries!
You ladies are so much more patient than me...I refuse PET where I get chemo drive 3 hours so that I can have PET and results all in same day! Plus it is really the only way to corner my husband into doing paperwork!!! See a silver lining...maybe my dark cloud is passing, I am starting to make myself laugh...Don't worry I am used to it just being me!!;)
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I was recently diagnosed with stage IV TNBC - mets to lungs. I'm not sure I've set up my profile correctly but hopefully you can see below that I was originally diagnosed in 2014 (47 years old) with stage II ER+/PR+ invasive ductal; had lumpectomy with 2/4 positive sentinal nodes so systemic treatment was AC+Taxol plus radiation; nine months after completing those treatments I was diagnosed with recurrence to one axillary lymph node; PET scan at that time showed no distant mets so we proceeded with full axillary dissection which revealed the recurrent cancer in axillary node had changed from ER+/PR+ to Triple Negative; we then proceeded with 4 treatments of Carbo+Gemzar which I completed at end of May 2016. My 4 month follow-up CT scans a few weeks ago showed multiple subcentimeter nodules in both lungs, largest was 8 mm. PET scan confirmed metabolic activity in the largest nodule but other nodules were too small to be evaluated by PET. No other mets identified in liver, brain, bones, etc. Lung biopsy 2 weeks ago of the 8 mm nodule confirmed TNBC mets to lungs. I have been treating with an excellent oncologist through a community hospital for entire two years since initial diagnosis although I sought a second opinion from a large national cancer institute at time of both my original diagnosis and my axillary recurrence and was informed by them that the chemo/standard of care my local oncologist had planned for me was exactly the same as the cancer center would recommend/offer so I continued treating with my local oncologist due to location/convenience of going to the many appointments close to home rather than traveling to the larger cancer center. At this point, given the limited success of standard treatment option of chemotherapy for metastatic TNBC and seeing how I have already been treated with 5 chemo drugs since my original diagnosis and still found myself with a metastatic diagnosis, I am considering moving all of my future treatment to the nearby cancer center which offers some interesting phase 1 clinical trials. The two I am considering would be one using an immunotherapy drug or the other which would be a potential targeted therapy. From reading through many of the prior posts on this thread to try to glean some guidance in making decisions now, it seems most of you have chosen to go with chemo/standard of care. I'm sure there are many reasons why and I'm interested to know if you would share those thoughts with me ... is it because clinical trials aren't easily accessible to you or because you're more comfortable keeping with standard of care, or upon advice from your doctors, etc. My main reasons for considering this route are (1) at this point mets are very small so no symptoms; (2) if I go with chemo now and wait for after chemo stops working, I could possibly be ineligible since meeting criteria for entering trials can be difficult if I were to be impacted with severe side effects from chemotherapy. My local oncologist recommended starting with Ixempra if I were to choose the chemo route. I know there are other chemo drugs out there commonly used for metastatic TNBC but he told me Ixempra is one commonly used for lung mets. If I go the clinical trial route and don't see some proof of stability or reduction in my cancer in a few months I would likely drop out of the trial and go on to another one or just go back to standard chemotherapy. Of course, the down side of clinical trials are the risks of the unknown with clinical trial drugs... unknown whether it will even help me and unknown side effects. I would love to hear any and all thoughts of those with similar diagnosis as I try to make this difficult decision ?!?! Thank you. And please know I pray for all of you to have long term success with whatever treatment choices you've made - the options/choices are all difficult to say the least.
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Amber- Iit amazes me to no end how "smart" cancer is and that all the really smart folks can't get a grip on it. I was reading last night about how early detection has a 100 percent survival rate. I was floored because it just isn't true and some of us don't have the luxury of early detection. ..I was still nursing my youngest and had no idea. Quite the blindside to start at stage four...grrr. I understand recurrence is hard, I have been hiding from everyone since mine last week. I am glad you found this thread, it is my favorite. ..everyone is very supportive! Hope to hear from you soon!
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About my scan... Results take long here. We have good medicine here - Good doctors, top technology... But we have socialized medicine. We pay very little in health insurance but things take time. If there's no real reason to rush you just have to wait your turn. If the doctor needed it right away I'd move to the top of the line and everyone else would get pushed down (I've done that too).
I'm not impatient about these results. I know what's going on without the scan. My metastitheest (made up word) in May grew out of the scar from my "simple" lumpectomy from last year. The scan then showed that it metastised to the lungs. So far none of the chemo are working. I see it growing on my breast. And now I have pain around my chest. So the scan will tell if it's the lungs or bones - Does it matter? I just started Erubilin and it's possibly working but this scan won't show anything about that since it's my third type of chemo since my last scan. After 5 chemo doses when it was obvious that the tumor was growing, not shrinking I switched chemos. There was no need for a scan. So now I'm positive that things are worse than May, and there's no way for the scan to see if the 2 doses of Erubilin had worked. It can only show bad surprises (my liver?). That's why I'm so patient.
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Hello everyone, I Love this site, I can vent and read about Women just like me unfortunately. Well I'm still in the Hospital, dealing with Fluid around my Lungs, which cause a rapid Heart Beat. I'm currently being told that, the Doctors want to put a Chest a Tube in so I can Drain the Fluid myself and go home. I'm currently taking Xeloda. I'm praying that it works so I can get off this Oxygen.
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This thread is really hopping! So much to say...first to Sherri, that is such wonderful news. I am celebrating with you!
I forget who mentioned it first but blinders is such an apt description of what we go through...this awareness to some degree of what surrounds us but so much of which we don't pay attention to most of the time. Then, bam! Blinders fall and it's all there again. All in all, I'm grateful for them to keep the fullness of reality at bay for so much of the time.
Good to hear from you Texas! I'm so glad you're out there enjoying retirement. Praying for more fabulous scans for you. Go CMF!
Sister, I'm glad you joined us and hope that you are feeling well soon and back to home sweet home. Keep posting!
And finally, to Amber. In my case, I know we did chemo first b/c I needed fast results with a liver dangerously burdened by cancer. No time to find and enter a trial. Immunotherapy is what I plan to do next. My onc said that immunotherapy gets best results as first or second line of treatment, though there are also good results for those who have had more chemo. And you should know that is measured by the number of treatments you have had in the metastatic setting...your prior treatments don't count. So, mine would be second line and yours would be considered first if you chose an immunotherapy trial over chemo. Immunotherapy is getting good results for TNBC and I don't think you need to worry that b/c it is in trial it is any less likely to work for you than chemo. If I were you, I think I'd try for the trial. If it doesn't work out, there's always chemo to fall back on.
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kaay- do you know the name of the immunotherapy you would go on next...I think you were PDL1-, like me?! Thanks!
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Here's a link to an article which describes the combo my onc was excited about for me. I do not express PDL-1 but it is said not to matter so much. I'm looking forward to this December to see how things are going a year later.
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Thanks Kaay! Although I wish you continued luck with current line!
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Thanks for your comments. So sorry we are all here together but the support and sharing of information is really appreciated.
Sister-Sister - sending good thoughts your way that you can get out of the hospital soon ! I just noticed your profile says from Michigan. Me too!
kaayborg - Thanks for sharing the link. Atezolizumab is one of the drugs being used in one of the clinical trials I'm considering. Three cohorts of the study will receive a new immunotherapy drug alone in different doses and a fourth cohort will receive that immunotherapy drug plus Atezolizumab. Sounds promising!
nrsteph - your comments are so true regarding myths of early detection as well as how smart cancer is. Scary smart! But I try to remind myself there are so many brilliant scientists, doctors, researchers out there who are starting to make strides with these new therapy modalities. Trying to stay hopeful that some of these new drugs might become the new and better treatments for metastatic TNBC. At least for me, I'm very fearful of relying on chemotherapy since it wasn't able to permanently eliminate my cancer when it was detected at stage II nor when it recurred in an axillary lymph node.
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Amber, I think that sounds like a great trial. I can't believe I forgot to comment on the early detection thing. Those slogans always make me start twitching a little bit and what I really want to do is scream...Stage 1A! Wasn't that early enough? Best protection is early detection...HA, HA, HA!!! I'm sure it works for some but obviously not the answer. Here I am on the fast track to early demise. Let's hope these new trials offer a lot of longevity for us all.
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Another thing: Atezolizumab is an immuno drug so I'm wondering what the other drug is? Are they combining immunotherapies or is the last cohort actually a chemo/immunotherapy combo?
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So confused...onc is putting me on doxil because I have to have two failed lines before qualifying for a study (sounds like above) I will post link later...
So odd how treatments for everyone are so different...same cancer but unique behavior and responses...oh the inconvenience!!!
Watched Bad Mom's last night with neighborhood gals and tonight going to local bar to watch the Hawkeyes play Penn State. While the guys watch the game I will be defending my spoons title with the wives...wish me luck...there are more important things than cancer like AL WAYS being the spoons champion!!!!
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kaayborg - the other drug is CPI-444 from drug company Corvus. The trial number in clinical trials.gov is NCT02655822 if you want to check it out. I'm still figuring out the mechanism of all of these drugs so may not have described them correctly in earlier post. So much to learn but truly believe being your own patient advocate is critical in our situation so I keep reading and learing as much as I can
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Thanks, Amber. I could not find at your address but this: https://www.mskcc.org/cancer-care/clinical-trials/... offered a clear enough explanation of cpi444 for me. I had not heard of that before. Interesting. I do hope it works and works well.
As for me, I have just yelled at my mother-in-law. Something I have never done, very unlike me. We could blame it on some drugs or something but it's been almost 2 weeks so steroids probably aren't at fault. I think cancer and its impending doom may be, though. The issue is actually my husband's health. He recently learned that he has rather high blood pressure, which runs on his mother's side of the family. I encouraged immediate action by following dietary recommendations for those at risk for heart disease, exercising, and losing some weight (something she's chosen not to do). He has done a great job and lost 20 pounds already. She keeps making comments that he's fine just the way he is, this visit and on her last a month ago. First it was that he shouldn't be cutting out so much salt. The body needs salt. Now it's that he looks fine and needs to be careful he doesn't get too thin. All bogus concerns. At comments this evening, I snapped. This is such a touchy issue b/c my children are not going to be orphans!!!!! I only wish my cancer came with a warning sign. My words were fine but my tone was anything but..This is not about how he looks, this is about his health and it would be nice if you could be supportive of his efforts for once because his health happens to be very important to me and our family (read between the lines lady because my 7 year old is behind you and I can't remind you that someday sooner or later he's gonna be all she's got). Steamed I am and my DH just came to let me know that when I stormed out she commented that we can't believe everything we read on the internet. You know that's just someone's opinion. People have been eating sausages for years. It's hard to argue with this nonsense, which is why I usually don't. We''ll just add health to the topics we don't discuss.
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Ugh. Just recurred within the last month after a wasp sting of all things fired up my lymph nodes like crazy on 9/10/16. Needle biopsy of the clavicle one? Cancer. Excisional biopsy? TNBC that matches original breast tumor. PET scan? Lymph nodes in both armpits, clavicle, neck, and around aorta light up. Stage 4. No brain mets no bone mets no organ mets. Looking at clinical trial at Providence in Portland, it's a phase II with option of oral zeloda chemo (one week on one week off) or weekly taxol and immunotherapy drug called "Pembrolizumab" via IV every 3 weeks, which hopefully means I can avoid a port ( do not want one again). Feel like I've been living with a ghost. Had I not gotten stung, I will still be blissfully unaware.
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Does anyone know anything about glembatumumab? My oncologist mentioned a possible clinical trial involving this drug.
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kaay- I think you captured our reality so eloquently. We cannot control our disease and our future or how that will impact our children; we can however, help high blood pressure by assisting withh lifestyle changes. What I wouldn't give up in order to reverse TNBC with less salt intake. I think it is hard for others to understand the desperate primal need to leave our children with atleast one able parent so that they will never have to endure another untimely loss. I take perhaps her lack of compassion or understanding of the true gravity of the situation as a credit to your grace in handling of this disease. You must handle it in a way that allows her to forget the reality we all face. I hope not to offend you with this comment, I really don't know what to say except I am on your side. You have always responded so kindly to my posts that I wanted to support you in kind!
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peacock- I hate that you are here but glad you reached out. I am hoping you will post often to let us know how the trial goes!
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Thanks, Steph. I appreciate your understanding and you said it so well. I think it was a primal instinct that causes me to react so fiercely. I apologized for my rudeness and she did so too for upsetting me. I am not sure she gets the gravity of my disease or she does but is confident in a way I am not, that God's gonna heal everything right up. Anyway, we're all good for now.
Peacock, sorry to have to welcome you but you are so very welcome here. You'll find plenty of support and that is what we all need. Best wishes for your trial. Keep us posted. It helps us all to know what is out there for us.
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Minxie, I thought I had heard about that drug before but when I googled it's not actually ringing any bells so can't help you out there. I do find it encouraging that there seem to be so many different drugs being tried...it's not like all immunotherapies are even the same. This sounds like good news to me. Is it even an immunotherapy? If not, what is it? Sounds like some type of targeted therapy.
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Kaayborg, from what I understand its a type of targeted therapy they're gearing towards TNBC.
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I posted this in another thread but thought I'd post it here too. It's a pretty good list of immunotherapy drugs in trials. There's not a lot of detail on each one, but a good glossary and some overviews of the basic mechanisms.
Im hoping I'll continue to see results from the abraxane + atezolizumab for a good long while, but I've been working my way down the list justto see what information is out there. The glembatumumab is listed, but I haven't found much more information than that.
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Received scan results today.....slight progression. Nothing new just small increase in size on mets! Biggest increase is 1.3 cm to 1.8 cm...all others are still on the mm size. So we are changing chemo. Kay I am going on your chemo Gem/Carbo. Will have a chemo holiday until after Thanksgiving then we start. I am good with this...CMF kept me stable for a year. I still feel great...so not worried about this change. ONC wants to stay with platinum based chemo for now then on to others. Havelan was the other choice but she wants to save for later. I did actually have one met decrease...but not enough to out weigh the progression.
Hope everyone has a good weekend. It is still nice here in central Texas so we will spend a lot of time on the patio enjoying the evenings
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Texas- one year on one chemo is amazing, I hope you have Kaay's luck on next line. Thank you for sharing you sound so much better than I did when I got my news...I will try to hhandle the next one with your class! Enjoy the patio...starting to get cold here 50 during day 28 at night! Winter might come...
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Ah, Texas, sorry to hear about the progression but at least your mets are still small and so is the progression. Also, good to hear you are taking it in stride. I do hope gem/carbo is as good to you as it has been to me thus far. Keep enjoying life!
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Thanks Kay and Steph!
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Hello everyone, I just got of the hospital on 11-11-2016 Friday. I had a Cathera inserted on my left side now, went from the right to the left. I have to drain my Lungs myself every 3 to 4 days. I'm still on a Oxygen 5 liters but that doesn't seem like enough. I'm praying my Xeloda works. I wish you all well.
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Sister-Sister, so gald to hear you're out. I do hope that the drains and oxygen keep you feeling well in the meantime it takes for Xeloda to do the trick. Thinking of you! Be well!
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So...can't stop crying. My local MO doesn't agree with Mayo onc. who specializes in breast cancer. Local mo says doxil is what she puts people on when there isn't anything else to do. I like them both very much but I don't know what I don't know so I have no idea what is going on...I know I need to ask more questions but which ones??? Just deflated...I have to see my babies grow... I know that no one wants to die but I really refuse to allow my 2,4, and 6 year old to grow up without me...in a dark place right now and could use some support...I signed up for google alert for TNBC so it is nice to read hopeful articles almost everyday...just don't know what to think, do, be. I was tired this weekend in couch for two days...feel like a horrible mom.
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