Triple Negative Stage IV
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Rhonda, sounds like you are on a good treatment path. I hope Xeloda lasts a long time for you. Keep those trials in your back pocket and research them in the meantime so when progression comes you are ready to go for the next thing. I wish I had done a little better with this before my progression.
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Rhondee and Lisamarie I'm glad you found this thread though sorry you are having to join us here. How's Xeloda treating you Rhondee? Have you started any treatment yet Lisamarie?
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Swabisht, I am so sorry to hear that your mother is not feeling well. I don't have much advice to give you. Trials may be difficult to get into at this point but it's always worth asking. I also really encourage you to get a second opinion. Sounds like perfect time to make sure all options are being considered.
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Julie, are you reading? Wondering how the trial is going? Eribulin is working for me so that's a relief. Not sure when I'll get my next treatment though. Still white count trouble. Trying again tomorrow.
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Dear Swabisht,
Welcome to the BCO community. We are so sorry to hear about your mom's situation and we are glad that you reached out here to support and advocate for her care. You may want to check out some information on our main site about Stage 4 triple negative breast cancer and you also may want to visit the Caregivers' forum for additional support for yourself. Please let us know how we can best help you to utilize our community and keep us posted about your mom. The Mods
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I came across this article and maybe John Smith can translate it to English for us not too medically literate. Stuff about triple negative near the end of the article.
Note: Wife's TN BC is on the run as her many spinal mets are either gone of in remission. Go Xeloda.
MikeW.
https://medicalxpress.com/news/2017-10-breast-cancer-drug-defeats-ras.html
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I met with Kimberley Blackwell at Duke University on Monday. She is testing me for gene mutations, scheduling me for another PET and Bone scan, and having all of my prior pathology testing reviewed by the staff at Duke. I have to make a 5 hour drive to see her, but I feel like I am in good hands. She says my cancer doesn't "act" right, that triple negative doesn't usually resurface 4 years out, and since my pathology reports and tests have always been inconclusive about whether or not is it indeed breast cancer, she is turning every stone to get a clear answer.
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Lisa Marie: sounds like you have an excellent plan with Duke
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Are there any Stage IV bone mets only TNBC members here for whom Xeloda did not stop progression? I'm wondering what other treatments are available. Currently getting radiation for progression to L5. Iliac and sacrum were radiated in January 2017.
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Hey Kay,
I have my 2nd vaccine next Tuesday. I will have a scan the week before my third vaccine to see how things are going. So far all good, no SE's.
SO GLAD Eribulin is working for you. I didn't have any luck with it. You mentioned problems with your white count. I had that problem after I had WBR for my brain mets and prior to trial. In fact they wouldn't let me do the trial unless I got my count up. I read to drink lots of water (at least 64 oz) of room temperature water. And my daughter (Masters in Nursing) told me not to drink alot before the labs are done....try to have labs in morning if possible. Drinking alot of liquids has a tendency of diluting the blood which will contribute to the low count.
I was lucky when I decided to check on Clinical Trials my Oncologist got the ball rolling....she set up the appointment and everything.
Hugs to all you ladies.
Julie
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Julie, so great to hear from you! Somehow my notifications got switched off for this thread and I missed your message. So glad your vaccines are treating you well. I hope to hear great news from those scans. I was able to have my treatment and now have added Neulasta so hopefully that will help with this Tuesday's treatment as well. Interesting about the water. Will have to keep that in mind. I also want to get looking at trials again. I still have yours in mind though the commute would be a rough one. Wish we could all have easy access to every available treatment. We are still having trouble getting an immuno approved off label. Not sure if that's going to work out or not so I better get cracking on all trial possibilities again. Who knows how long eribulin will last. Hopefully a good long stretch. My scans will be after this next cycle. I know it's working but not how well. Belly is still quite distended.
Take care!
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I know Peacockgirl was active on this forum for a while. Sadly stopin to let you all know that she took a rapid turn for the worse and has been moved to hospice. Nichole is such an amazing gal. I was lucky enough to get to run a coupe half marathons with her. Please pray for peace for her and her awesome husband. Sorry to jump in with such bad news.
Wishing you all NED with your current treatments.
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I am so sad to hear this. Thank you for letting us know. I am praying a flood of peace for Nichole and her husband. I wish so badly it just wasn't so, these circumstances, but do believe that peace can still be ours no matter what.
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i am heartbroken to update that Nichole, aka Peacockgirl, died this morning.
I was lucky enough to get to meet her twice, and run a couple half marathons in Vegas when we got together. We kept in touch and texted often. She was a sweet, funny, charismatic, caring gal. I will miss her so much.
Best wishes to all here
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Thanks KBeee , prayers & healing hearts to all involved. HUGS
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so sorry to hear this news, my condolences to all who,loved her
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So sorry to hear of this incredible loss. My heart is heavy. Prayers of comfort to all whose lives were blessed to be touched by hers.
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Hi LisaMarie
I am interested in finding out what you learned during your trip to Duke. I have a similar situation as yours being I was diagnosed with Stage 1 in September 2011. Now almost 6 years later I was diagnosed with Stage IV that has spread to the lungs (August 2017). I traveled down to MD Anderson and they are doing some genetic testing on me as well. They are also testing my tumor to see if I would be a candidate for a trial going on down there. I'm eager to find out more information and see where we go from here. In the meantime they did start me on Halaven. Hope you are getting some answers and doing well!
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Hello, Hope! I'm glad you found this thread. It sounds like you have a good plan in place with genetic and tumor testing. I am always surprised to read of people who were stage 1 at diagnosis. So much for early detection is the best protection. I was stage 1A, though my mets were found only 6 months after I finished treatment. Yours being 6 years is unusual but perhaps a good sign that your tnbc is of a less aggressive variety. I'm sure it came as a shock. I at least had it in my mind that if I made it to the 5 year mark, I'd be in the clear.
Anyway, I also wanted to let you know that I have recently started Halaven as well. I start my 2nd cycle on Tuesday, doing fairly well with it and it seems to be working. Scans before the third cycle. There is also a Halaven thread here which you may wish to check out. Wishing you the very best and hoping you qualify for the trial.
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I had scans yesterday. My cancer in my lymph nodes has grown as well as the two tumors in my liver. Also, two more appeared in my liver. I was dx in July with TNBC with mets and started Taxol in September aftern having AC in May, June & July. So the Taxol didn't work. What has worked for y'all the longest? I meet with my onc at noon today to discuss the next treatment. Thanks for your input.
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Kaylynee, so sorry to hear this. Do you have any genomic testing to point to a next treatment? Like Foundation One? Hard to say what might work as effectiveness varies from person to person. That being said...Taxol was garbage for me too but carboplatin was a gold mine. Worked 2 years. Carbo can work well with Tnbc. I started it in combo with gemzar which does well with liver mets. I think you'd do well to look at immunotherapy trials as well. Earlier may be better to get the most out of immunotherapy. Let us know what you learn at your appt. Hope you get some peace of mind soon.
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Unfortunately, MD Anderson advised me that even after taking 5 core samples from my liver in July, they don't have enough tissue to do the genomic testing. I call BS and think they were lost. I am ready to start all over with a trial anywhere else but there. I'm researching now to see what I can find.
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Now may be a good time for another biopsy, especially if they can get samples from the new liver tumors. I had mine redone at progression but results are still pending. Did you learn anything interesting at your appt?
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Hey ladies...just checking in. I have been spending more time on FB private pages...if you are interested I listed a few below.
I will have a CT/MRI scan on Wednesday and biopsy the following Monday before I can continue with the trial. Hoping for good scans so I can continue.
Kaylynne I am on a trial that is conducted at Mary-Crowley in Dallas. All they do is trials. Check them out. I had been thru 5 different chemo's in 2 years before I decided to try a trial. CMF worked best for me, kept me stable for a year.
Kaay...hoping the Halaven is still working for you.
FB pages
Closed Metastatic Breast Cancer Support Group
Living Metastatic One Day At A Time
Hugs to all you lovely ladies!
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Julie, best wishes on your scans.
I'm currently in the hospital again so it seems eribulin and I still have some things to work out. First it was tumor fevers that caused the infection prevention to- do. Now it's neutropenic fever. Not worried about anything. I have cold symptoms which had me feeling quite miserable but feeling a bit better tonight. Neulasta should have neutrophils up soon and we expect blood cultures to be negative. Just waiting it out.
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Praying for you Kay!
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Thanks TexasRose. I will check that facility out.
My doctor informed me that the original 2cm tumor in my liver increased to 4cm. They gave me a disc after my PET. I hadn't realized I could view it at home. I saw the 2 extra ones and thought the one had increased. Technology is amazing. Who would have thought you could read your own scans? Of course I had no idea the size of the tumors. My local onc is referring me to a TNBC specialist in Dallas with Texas Oncology. I hope to hear about an appointment Monday. They have several trials too. My onc thinks they will put me on gen/carbo combo. I read about the side effects online. What are y'alls experience with these drugs? It's scary as hell to see progression. I'm planning trips. We just got back from NYC and had a wonderful time with friends. The day after Thanksgiving, my daughters and I are going to Orlando to Harry Potter World. They grew up with my reading these books to them out loud using different voices. They are now 28 and 33 and still love him. The pics are of my NYC trip with my friends and also my daughters.
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Kay,
your pictures are so lovely! Looks like you've had a terrific time with your daughters and your friends!
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Thanks sfgirl! We had a blast.
Does anyone know anything about Sarah Cannon Research Institute in Denver? They are conducting a trial that I'm interested in. I am posting the link so if any triple negative's know about this trial please fill me in. I follow another group on FB and one of the members is partcipating in this trial and has great success. https://clinicaltrials.gov/ct2/show/study/NCT02981...
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Don't know about that research center, but I read about the trial, and what I liked is that there is no placebo arm. Everyone is getting an actual treatment. There are 2 groups: with melanoma and TNBC.
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