Calling all TNs
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Just stopped by to see if there was any update on Cocker. So happy to see all the good news from the others! Good news is good! Hope everyone is doing well. Cocker (Annie), you're on my mind! Love to all! Mike
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Ladies with a bit of luck I might feel better next week, no chemo. It might take me all day but I will post. Your love and support, along with my wonderful family has kept me sane and kept me going. Still on the grass side of life, so far. love you Annie xxxxx
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Cocker Annie,
What a surprise! That's great!!!
Really happy for you!
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{{{{{{{ANNIE}}}}}}}
SO glad to see you!!!
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Hi, Momy4ever - fortunately or unfortunately, the decision on whether to do Xeloda or a platinum based drug will be out of my hands. That choice will be made by the computer randomized for the clinical trial. If anyone wants more info on this trial, go to clinicaltrials.gov, EA1131 or NCT02445391. It is specifically for TN without full pCR after neoadjuvant chemo. I went from 3.8cm to 1cm after AC+T, but still had 2mm of cancer left. The trial stops at 1cm, so I was on the cusp. I hope to hear soon, as the platinum based is 12 weeks and Xeloda is 18 weeks. I'll be finishing up with rads Mar 13, and the earliest you can start is two weeks after (latest you can start is 24 weeks after surgery).
Annie - good to hear you are holding strong! 🎉🙏🏻
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HI ANNIE!! Wonderful to hear from you! Keep feeling better and better!
Congrats to those finishing treatments and welcome to the newbies here!
Meadow, - how are you doing?
I dont post much, but I read and think of all here, sending BE WELL wishes to all of my cohorts on these boards!
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Hi All!
I love the happy banter on this thread!! I have completed all of my necessary treatment and am now doing "preventative" Xeloda treatment for 8 cycles. My tumor was 5.7 cm half on chest wall and half in breast. It took only 45 days from when I found a hard place on my breast to get to that size! After 4 doses of AC and 12 weekly doses of Taxol, I thought it had shrunk because it was gone from the chest wall. At surgery it was found to be 6.1 cm in my breast, but it had completely slid off the chest wall. How crazy is that! Nodes and margins were clear. So, since my tumor grew, I am doing preventative measures. I am 5 days into the Xeloda at 3000 mg a day at 2 weeks on and 1 week off constituting one cycle.
I was very healthy and in-shape when this happened to me and for the most part ate very clean. It's a mean and nasty disease that really took me by surprise! I'm sorry that we have all found ourselves in the TNBC club, but I guess it's just one of those tough obstacles in life that we have to face and conquer when it comes our way! I look forward to sharing positive thoughts with y'all on this thread!
Tonight the TNBC support group that I am in in my city are all meeting for dinner to celebrate TNBC day. I wish you ALL WELL on this day that celebrates us and our struggles!
-HarleyDream (My username is my 2 horses squished together!🐴🐴
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It's so good to hear from you Annie. (((hugs)))
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Annie great news!
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Annie
So glad to hear from you! Sending you hugs and prayers and strength!
Love to you and your family,
Arlene.
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Hi Annie!
Welcome HarleyDream! Sounds like you have a great attitude.
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Annie....What a wonderful surprise to hear from you‼️
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So very happy to hear from you Annie. Much love to you and your family
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Welcome HarleyDream.
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Is anyone taking the copper depletion drug?
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Annie so great to hear from you!! Keep getting stronger but don't overdo. Xoxoxo
Arlene your looking great! Nice to hear from you
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Annie it's so great to hear from you!!!! This made my day!! Still holding you tight and keeping you in my prayers!! Love you so much!!
To all the newbies, welcome to this wonderful group. We are sorry you have to be here but you're in the right place!
Congrats to those finishing treatment!!!
Much love and prayers for everyone! XOXOXO!!!
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Cathytoo, what is the copper depletion drug?
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aterry...TM is a copper chelation compound
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Cathytoo - I'm curious,what is the purpose of the copper depletion drug?
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Seeing my onco tomorrow...guess what I'm going to ask her about?!
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adarkadapted....WHAT
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copper depletion therapy? I read a bit about it...small sample size in the studies and wonder why my MO hasn't told me about it as it has been in study for quite some time....thoughts, anyone?
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Batesburg....My MO negates everything I inquire about unless results have been proven after clinical trials. He said no to Metformin, but I'm going to do some research to find an oncologist in my area who has worked with the copper depletion drug. I want to try it and have already had my copper levels checked as a first step. Results showed normal level. From what I read, the drug has to be compounded and you need to be monitored closely. Also read that the drug is well tolerated and that the first adverse side effect is anemia which can be corrected quickly by changing the dose of the drug. I think with a TN diagnosis, you need to try anything that might stop a recurrence
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Hello my dear Annie! You are a strong warrior, and we all love you!
Thanks for checking on me Another. I am plugging along. I may get to have my open wound closed on this Friday. For those who may not remember, (or wish it would just go away, lol), I had a revision surgery to my reconstruction to repair some damage to my boob from radiation. This was Dec 27th.....long story short, the implant became infected, had to be removed, and I have been packing an open incision since. But hoping to get it closed on Fri, the infection is gone, I hope. No more implant on that side, my surgeon saying the tissue won't tolerate it. Diep flap, or flat. Probably going flat.
Harleydream, Welcome! I too love horses. I lost my sweet old man Arabian gelding a couple of years ago, and I still miss him dearly. We have 2 still, a mare who thinks she is queen of the Earth, and her 7 year old colt, that we broke to ride ourselves. He is a great horse, but younger, and I can't just jump on him bareback like I could my old man Tonka. I miss being able to trust and relax, but we will get there. Tell us about Harley and Dream!
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Cathytoo, thanks for bringing this to our attention. I read the Weill-Cornell page. I've added copper depletion to my list of questions to discuss with my MO after chemo is completed.
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hi Meadow. So glad to hear from you. Hoping that wound gets closed soon. what an ordeal. sending hugs your way.
welcome haleydream.
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Hi everyone!
A little more about the copper depletion--I, too, find it very compelling! The phase 1 and phase 2 trials had very impressive results, in my opinion. But Dr. Linda Vahdat, from Cornell Weill who ran the trials, has had difficulty getting Phase 3 funded. Basically, TM is an old drug, so there is no pharmaceutical company that stands to really benefit from a successful trial. So despite exciting results, this has been in limbo for a while. Dr. Vahdat is now trying crowdfunding to get the next phase started, while still pursuing government funding/other options. I did make a donation even though I don't think that I qualify for her trials, because I love supporting one of our hero researchers focusing on TNBC. This is intended as an "after-treatment" to help prevent TNBC recurrence. You can google and find many articles. Here is the crowdfunding page:
https://crowdfunding.cornell.edu/project/2782
But something that I think I DO qualify for is the vaccine trial for TNBC people who had residual cancer after neoadjuvant (or were T3 or N1-3 at the outset, regardless of adjuvant or neoadjuvant). This is for the folate receptor alpha peptide vaccine, a type of immunotherapy vaccine. Angtee, the one that I'm looking at is very similar to your trial, with a few tweaks, and one of the sites is close to me (Dana Farber). This version of the vaccine trial is NCT03012100. I just made an appointment at DF for the end of the month to make sure I qualify and learn more. I'm likely to participate. I think I"ll just feel better throwing one more weapon against this TNBC. On the downside, this is just a Phase 2 trial. There isn't much data yet proving this will be effective (that's the point of the Phase 2 trial, right?). So altruistically, I'll be doing my part to further TNBC research, but on a personal level may not have a lot to gain. Has anyone else done a Phase 2 trial? What were your thoughts? I had been in a Phase 3 trial when first diagnosed (in addition to ACT chemo, I got carboplatin and may/may not have received Veliparib or placebo as a bonus). But Phase 3 seems much less risky to me than Phase 2. I'm kind of nervous about this.
Harleydream, I also did 8 rounds of Xeloda after surgery. I was RCB2 (had an 8 mm tumor left after chemo/surgery). I kept dreading hand/foot syndrome, but I barely had any. I found Xeloda to be very tolerable!! Good luck.
Meadow, so sorry about all you are going through. I hope Friday works really well!
Tulips
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Hi All, - I hope your week is off to a good start!
Meadow, - Good luck on Friday! It's about time you were able to get that wound closed!! Are you considering lat flap as an option or only diep? Lat was my only option after other attempt failed.
I am seeing my onc on Friday. Always get nervous before checkups. ugh I will ask her about copper depletion.
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