Calling all TNs

greenae

Annie

So glad to hear from you! Sending you hugs and prayers and strength!

Love to you and your family,

Arlene.

LoveMyVizsla

Hi Annie!

Welcome HarleyDream! Sounds like you have a great attitude.

Cathytoo

Annie....What a wonderful surprise to hear from you‼️

Valstim52

So very happy to hear from you Annie. Much love to you and your family

Valstim52

Welcome HarleyDream.

Cathytoo

Is anyone taking the copper depletion drug?

slv58

Annie so great to hear from you!! Keep getting stronger but don't overdo. Xoxoxo

Arlene your looking great! Nice to hear from you

Luvmydobies

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!!!

aterry

Cathytoo, what is the copper depletion drug?

Cathytoo

aterry...TM is a copper chelation compound

SuprSurvivr

Cathytoo - I'm curious,what is the purpose of the copper depletion drug?

Cathytoo

http://news.weill.cornell.edu/news/2013/02/copper-depletion--keeps-high-risk-triple-negative-breast-cancer-at-bay

6feetover

Seeing my onco tomorrow...guess what I'm going to ask her about?!

Cathytoo

adarkadapted....WHAT

Batesburg

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?

Cathytoo

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

Meadow

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!

aterry

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.

Valstim52

hi Meadow. So glad to hear from you. Hoping that wound gets closed soon. what an ordeal. sending hugs your way.

welcome haleydream.

TulipsAndDaffodils

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

anotherNYCGirl

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.

MomMom

Wonderful to hear from you Annie!! More love & prayers being sent to you. Cannot wait for your update!

Meadow - prayers for you too.

Stay strong all you lovely ladies.

XOXO

Paula

Meadow

Another, yes, the Lat flap was his first choice option for me. And yours was successful?

Thank you MomMom, I will take all the prayers I can get!

blamoms

just checking in. I had my first 6 month mammogram today and see my oncologist next week.i can't believe. I can't believe it's been 6 months since I finished chemo and radiation. Hope everyone's is doing well

Cathytoo

Meadow...sending prayers and love.

Meadow

thank you dear Cathy! I can feel your hug!

4everStrong

Annie! Nice to hear from you again.. missed your sense of humour and it feels great to have your news again! Always in your pocket.

Copper depletion.. have also asked my MO about it last year and he believes there isn't much on it, not enough to make it an inteseting drug to take. Personally I still believe this is better than taking nothing. Unfotunetly he does not share the same point of view.

He also said no for metformin and aspirin. Only said yes for vitamin

Valstim52

Hello All

In your pocket anothernycg and blamom for your onc visits. mine is on the 21st. I know she will poke and prod, but I've been to my surgeon and pcp in the last two weeks. So no anxiety yet for seeing the onc.

So nice to hear from you 4everstrong.

It is very encouraging to see TN getting more options.

25 years ago I was in a trial for tamoxifen. To see it as first line of defense for bc now, really gives me hope that more will come up for TN.

I am on metformin. My MO does not say yay or nay about it. It didn't stop me from getting TN. Maybe it will help in recurrence.

She says xeloda and or carboplatin would be used if i recurred. I did not have residual, but out of 25 nodes i had a micromet left. So they viewed it as a good response.

4everStrong

hi val

Great to read you too.

I am waiting for my next appointment with doc for genetic results to see if I am positive to brca.

I read a lot about tnbc .. immunotherapy sounds interesting . Immu132 and leflunomide

below are few articles

https://www.cancercommons.org/tag/immu-132/

https://www.sciencedaily.com/releases/2017/03/1703...

And you are right.. things are moving, scientists are close to develop something.. everyday they seem closer and closer..

Positive vibes to al

HarleyDream

Thank you for the warm welcome ladies!!

Tulips- I followed your Xeloda experience!! THANK YOU for taking the time to share your experience!!! I too am very active and was dreading taking "more chemo" because I didn't want to stop all the things I love to do!!! Plus my last child is graduating and I want to be a part of everything! I felt better after reading along with your story! I am currently 9 days in the first cycle and I'm ok!

Meadow-I'm so sorry that you have had to deal with so much! Your attitude sounds strong and that is more than half the battle so continue to be brave and better days will come! As for my two horses, they are both rescues that I have had for many years. They bring me peace and joy just being with them! I hope you enjoy my cute pic of Harley! He is a lot of fun!

- HarleyDream