Desperately Seeking Hope

carawolffm

I am writing because I am desperately looking for stories that can bring my sister hope. She was diagnosed with Stage 3b TNBC in January 2014 - her tumor was very large and aggressive and grew to almost 10 cm in a matter of a few months (she had a clean mammogram just a few months before her diagnosis in November 2013), and she had 2 out of 2 positive nodes at the time of diagnosis. She then had about 6 months of neoadjuvant chemotherapy (taxol + carboplatin/AC, switched to abraxane due to alergic rx to taxol, and then switched to erebulin (halavan) after her response to abraxane tapered off), and her double mastectomy was just a few weeks ago on July 15, 2014. She is recovering well, but is feeling very hopeless because the path report said that all 15 of the lymph nodes removed had evidence of disease. The good news is that the erebulin seemed to be very effective because her former 10 cm tumor shrank to 1.6 cm at its largest diameter. She has looked for survivors who have similar circumstances to hers and can't find any and is starting to feel like it is because no one with cancer as aggressive as hers is still alive. If any of you have stories to share about survivors who did not have a PCR at the time of surgery and who also had all or many positive nodes removed at the time of the mx, I would be so very grateful. Thanks in advance for your time...love and strength to all of you. Sincerely, Cara (Melinda's sister).

Moderators

Hi Cara,

What a good sister you are to reach out for some inspirational stories for Melinda. We know you've come to the right place! We're sure there will be others posting their support and hopeful stories soon, but in the meantime, you may wish to look for comfort in this thread on the triple negative forum. Also, this is the blog that that thread references: You CAN Survive Triple-Negative.

In addition, there's a wonderful, inspirational forum here called Biographies and Inspiring Stories that is sure to give you lots of hope!

We hope this helps!

--The Mods

naturegirl11

https://community.breastcancer.org/forum/72/topic/...

Here is a link to stories of long term survivors. I think you are a great sister as well and will be praying for Melinda. I recently read a recent research article from Germany, it was a large study of over 6,000 women. It divided up women by outcome of how much disease was left after surgery. I believe it said that 60 - 68% some percent of women with larger volumes of residual disease were still alive at two year follow up. I'll try to find it and send it to you. I remember meeting with a doctor who would say, "why can't you be in that group?" Then I had a woman contact me who had stage 4 triple negative and had 5 years of NED. I'm praying your sister remains hopeful and that they removed all the cancer during surgery. I would think the fact that her tumor shrunk is good. Big Hugs to you both....

dlb823

Cara, I'm not TN, but I know from reading as much as I do that there have been some pretty significant advances within the past few years in the treatment of all types of bc, including TNBC.   For example, even doing neo-adjuvant chemo for TNBC is something relatively new.   And I think Halavan is a very new, third generation chemo drug (approved in late 2010).  What your sister needs to keep in mind is that survivors who are now 10 or more years out would have been treated at least 10 or more years ago -- prior to the advent of so much new research and newer drugs, so it's not even the same ballgame today.

It sounds like your sister is getting excellent care.  But if you or she have any doubts about what's being done or what you've been told, I know there are several medical institutions and breast cancer oncologists around the country who specialize in TNBC -- at MDAnderson and UCLA, for example -- and she could always get a second opinion at one of those (if she's not being treated by a top TNBC expert now), just to be sure her treatment plan includes all the very latest advances.  (((Hugs))) to you both.  I'm sure she's very grateful for the research you're doing for her!     Deanna

italianwoman

• Hello... I am Italian, I don't speak well English ... I wanted to tell you that I had also In 2010 very aggressive cancer, triple negatiT3n1m0, with a mass of approximately 12 inches AFTER neoadjuvant chemotherapy the mass was reduced, but not disappeared and were 2 to 25 lymph nodes involved; I had the reconstruction with Diep In 2011. I'm so glad all is well. The fact that the chemo worked well for your sister it's important ... remain confident ... a big hug..

This is what i wanted to write ..I messed with the copy paste ... sorry for the mistakes

thanks for the translation dlb823 friend

dlb823

I took a few minutes to translate Italianwoman's post using Babelfish...

• Hello... I am Italian, I don't speak well English ... I wanted to tell you that I had also In 2010 very aggressive cancer, triple negatiT3n1m0, with a mass of approximately 12 inches AFTER neoadjuvant chemotherapy the mass was reduced, but not disappeared and were 2 to 25 lymph nodes involved; I had the reconstruction with Diep In 2011.  I'm so glad all is well.  The fact that the chemo worked well for your sister it's important ... remain confident ... a big hug