Calling all TNs

Insideout2 · January 2018

I was diagnosed in December with cancer in my lymph node. I had an MRI guided biopsy on my left breast when I had my port placed in 01/11/18. I was informed I have 2 primaries on 1/23/18. ER-/PR- on both locations, but neither listed the HER2 status. I did ask about this and was told it was not in yet. The left breast is DCIS. The recommendation for me is to have chemo 1st then surgery. Chemo is to start the week of 01/29/18. I was told most African American women are TN. My mom was diagnosed with cancer around my age. I pulled out her certificate last week to research something else and found her first dx was for metastatic cancer. It is bothering me I can't recall all her details. It was 24 years ago and I was 21. I am logging everything for my daughter, sister, and nieces. I know everyone is different, but I think it is important to have as much information regarding my journey available to them.

VL22 · January 2018

Hi Insideout2 - sorry to hear about your diagnosis, but glad you are moving along. Have you had genetic testing done? You seem like a good candidate.

I would get HER2 information from your DR - it is very important for the course your therapy will take and you should have all information.

Your mom’s records might not say she was TN, even if she was, since it was so long ago.

Good luck with h chemo starting this week!!!

AgathaNYC · January 2018

Hello, InsideOut2. I'm sorry you have to be here, but it's good you found these boards. It's a good place for support and information.

Sometimes the staining process for HER2 status can take longer so I'd follow up with your oncologist. It probably won't effect the kind of chemo you'll get initially but could later treatments.

Good luck with your first chemo session. If you haven't already done it I'd get on the thread "Starting Chemo January (or Feb) 2018". I found it so incredibly helpful to have an ongoing conversation with other women who going through the same thing at the same time. You'll likely find other women who have very similar diagnoses to yours so can talk about that, too.

If your insurance will approve it I would go for genetic testing. It would be a help not only for you but all the family members you are already helping my logging details. Even your male relatives.

I hope everything goes smoothly as you start your treatment. We're all with you in spirit.

rdeesides · January 2018

Hi, I’ve been a little AWOL just because I have been working through all the emotions of having NO respnse to neoadjuvant chemo. I will now have rads and my MO is investigating getting me in an immunotherapy clinical trial. MO doesn’t believe in Xeloda for some reason, but I will push for it.

The positive news is that because I had neoadjuvant I KNOW I didn’t reapond to chemo and can be proactive. MO says 50% chance of recurrence but I think that is just a way to say she has no idea what will happen.

Rebekah

Insideout2 · January 2018

VL22 and AgathaNYC thank you.

mkn86 · January 2018

i’m sorry you have to experience that frustration rdeesides/rebekah. it is not easy and chemo isn’t a walk in the park.

I’m going through a somewhat similar frustration with my chemo too. all that work and still i need a mastectomy. while i recognize that chemo is primarily meant to be systemic treatment, it’s still devastating to have to mourn so many things as treatment progresses. sometimes i consider saying “go ahead add two or three more doses and see where we end up maybe it’ll be smaller by then” But of course that’s me being stubborn.

just wanted to let you know you’re not alone.

if there’s a way we can support you, even just by letting your frustrations out, we’re here.

VL22 · January 2018

Rebekah - so sorry you are dealing with this. I find your MO’s estimation of 50% to be extremely high. I’m obviously not an expert, but I’ve looked at some clinical studies about this and nothing is that high. And most of the studies combine stages 2 and 3.

It must be so hard to cope with this disappointment. Have you considered getting a second opinion? It is never to late in the process to get a new set of eyes if you feel the need.

Thoughts are with you.

Valstim52 · January 2018

Welcome Insideout2. So sorry you have to join us. As I can attest to, i had my first breast cancer 28 years ago, all they knew back then was if you had a positive hormone receptor. I did. this time TN all the way around. Genetic testing is very good for your family members and for future treatment depending on the results. Ask us anything. Most on the board have been through it.

Val

yanio9 · January 2018

how much your tumor reduce after first session of chemo ?

Char105 · January 2018

Hello everyone.

Just found this board and I to am triple negative. When I first found out I made the mistake of google and boy was it all gloom and doom. Really scary that it makes that much of a difference. I go for my 2nd round tomorrow and I am hoping it goes better than the first.

JAN69 · January 2018

Stopping by to say hello and mention that I'm 7 years post diagnosis and doing great. Char and other newbies, all is not doom and gloom. You should be fine. Best wishes to all who are starting your own treatment. Jan

KSteve · January 2018

I want to chime in along with Jan to all the newbies. I'm 7+ years out and doing amazingly well. I'm in the process of wedding planning with my daughter and loving life! It's no fun when you're in the middle of treatment, or just beginning, but keep taking it one day at a time and it will get better. You can do it!

Hugs,

Kathy

Char105 · January 2018

Jan69 & KSteve. I'm glad you posted regarding being 7 years or more and doing great. That does put a positive spin on it for me. This has been such a rollercoaster with the last dip triple negative. I had the surgery first and they didn't have any pathology reports so I just had a lumpectomy. I'm hoping that does't make a difference. It seems most have had the mastectomy.

Thanks for the positive, I needed that right now.

VL22 · January 2018

Thanks Jan69 and KSteve! So great to see node positive survivors! So happy for you both!

Char105 - I didn’t know I had a TN tumor until after surgery and I also had a lumpectomy. Having a mastectomy does not decrease the risk of cancer spreading to other parts of the body , so do not spend another moment stressing about that!

Googling about TN can be horrible, but the truth is that women with your stats do remarkably well. You’re treating this aggressively and I wish you well!

You’ll get a lot of support here!

rdeesides · January 2018

Jan and Kathy, Thank you for posting and reminding us that there is hope.

Rebekah

Char105 · January 2018

VL22 - Thanks for the response. I agree google isn't the thing for anyone to do that is TN, but I did find this page that way which is a good thing. I keep taking it one day at a time and trying to stay positive. I guess it was the shock on how much it changed from the beginning to after the surgery. But at least now that all the reports are back this is what it is. Going from lumpectomy, 1 time radiation, and taking maybe a hormone pill, to chemo, radiation and triple negative was the shocker.

SoniaL · January 2018

Thanks Jan and Kathy...your reports are so encouraging!

marianelizabeth · January 2018

Right up front, I am not TN. However I did get a response from DiV on another thread in the fall after I had posted about looking for someone who has a similar diagnosis to mine. My tumour is entangled with the brachial plexus neurovascular bundle. She responded saying she lost her arm to amputation due to similar dx. She posted here but not since then I have not seen a post. Does anyone know her? I fear that things have not gone well.

aterry · January 2018

marianelizabeth, you can do a search for DiV. Click on the search tab and then choose the search by member . I'm sure she would like to hear from you. She posted in early December.

Rebekah, I second the suggestion that getting another opinion from a different MO could be helpful to you--to try to find some peace of mind. During chemo I had no tumor shrinkage from Adriamycin which was depressing since it is such an awful drug. Taxol helped which was a surprise since I thought Adriamycin was the big gun. I hope you're being treated at a major cancer center, if not is there one within a reasonable distance? I've never heard anyone quote 50%.

Trishyla · January 2018

Marianelizabeth,

I also "talked" with Div in the fall. She posted after the surgery that things went really well, and that she was adjusting nicely to her new reality. She said she was going to be very busy with rehab, her boyfriend and I think a new puppy. She sounded very cheery and upbeat.

You could try private messaging her. I think she's listed as DiV.

Hope your treatment is effective (and tolerable). Trish

marianelizabeth · January 2018

I did try to PM twice with no response and when I searched the last post I found was also early December. I do hope she is well and adjusting.

I am on Ibrance and Faslodex and opioids for nerve pain and have another scan in March. Thanks all!

Theresa987 · February 2018

hello all, I'm 57yr old diagnosed in October 2017. Triple neg 2B beast ca. 2 positive lymph nodes. Completed 4 dose A/C chemo. First dose taxol had a reaction, hand/foot syndrome, then full body nasty rash. So no more taxol for me. Been on daily IV steroids/fluids for 3 days now.. Tomorrow I start Abraxane. I am very nervous. I've been reading probably too much about abraxane. Does any one have experience with Abraxane? Ugh! Sorry if I'm posting this in the wrong thread. Thanks!

mkn86 · February 2018

Hi Theresa, welcome to the thread! I’m sorry about your diagnosis.

Despite the circumstances you are surrounded by other who will support you.

Doctors usually start with taxol or taxotere if the treatment protocol uses a taxane-based treatment. In case there are allergic reactions their protocol is to use abraxane which is a milder form from the taxane family.

I know someone who had a bad allergic reaction to taxol (paclitaxel) and was switched to Abraxane and she was able to complete her chemo protocol last week Her hair also started growing for the period of her Abraxane treatments. Of course we all react differently, but that’s a bit of reassurance for Abraxane and hopefully it helps ease some of your worries about the medicine.

angiepie · February 2018

Theresa- I did 3 infusions of Taxotere..each time my rash on my legs got worse and moved up mu leg (first Taxotere it was splotchy patches on shins that peeled, 2nd infusion it was bigger patches, 3rd was an AWFUL burn on my knees and thighs (i had iced my hands and feet during infusions so hand/foot syndrome moved elsewhere on my legs). It was so bad after 3 that oncologist switched me to Abraxane for my last infusion..still got a rash/burn but this time on my butt and back of thighs. Took extra steroids and slathered in lotion. I am now month and half after last chemo and legs are still splotchy but definitely fading

aterry · February 2018

The clinical trials coordinator at the center I go to (Dubin in NYC) told me that they've just started offering 2 trials to their triple negative patients. One is by NRG Oncology: A Randomized Phase III Trial of Adjuvant Therapy Comparing Doxorubicin Plus Cyclophosphamide Followed by Weekly Paclitaxel With or Without Carboplatin for Node-Positive or High-Risk Node-Negative Triple-Negative Invasive Breast Cancer

The other is by Novartis: A Multi-Centered Randomized Phase II Comparison of Single-Agent Carboplatin versus the Combination of Carboplatin and Everolimus for Treatment of Advanced Triple-Negative Breast Cancer

I'm sure you can look them up on Clinical Trials to see where else they're offered & learn more about them.

Webelos8 · February 2018

Hello, I'm new here, still recovering from my mastectomy/reconstruction and waiting for my chemo to start. I was diagnosed in November 2017 and had my surgery about 3 1/2 weeks ago. I still can't wear a bra comfortably (any kind of bra, they all hurt!) and I go back to work on Monday 2/5.

Diagnosis was triple-negative and the genetic testing showed no genes that would cause it, and I have no family history of breast cancer so I guess I get to be Patient Zero.

Next week I have a follow up with my general surgeon and I get my port placed. I know it sounds shallow but I'm super devastated about losing my hair; all the other side effects, I can handle.

-A

VL22 · February 2018

Webelos8 - nope, doesn’t sound shallow. I thought I was prepared and cried in the shower for days as my hair fell out. I’m 5 weeks post chemo, my hair is growing back in and I still mourn it.

Sorry you have to be here, but it is comforting to have others to lean on who share your diagnosis. Chemo can be truly awful for some, but eventually you get to the other side of it. You’ll find a lot of support here and great information on all the threads

Theresa987 · February 2018

Hello, thank you so much for your replies! My Onc is now starting Abraxane a week from today. Was supposed to be today, but she wants to give my skin time to heal a little more, plus 5 days of steroids IV. She tells me my reaction was severe. My rash is fading, swelling on hands gone. Still nervous about the Abraxane next week. I really appreciate the input on this site. Thank you again.

When I lost my hair I found it extremely difficult! Cried a lot. Bought a bunch of hats, didn't like the wigs. After my 4th dose of A/C and the one dose of taxol, I now have white peach fuzz growing...excited...but I think the fuzz will fall out when I start the Abraxane ...such a tease. we shall see. I moisturize my scalp every night with Johnsons pink baby lotion....

Webelos8 · February 2018

I'm looking for hats, but I'm having a tough time finding any that don't scream "Chemo Patient!!"

*Sigh*

One thing at a time, I guess.

Good luck with your next round, Theresa987.

VL22 · February 2018

Webelos8 - that was my issue. To be honest, It was a huge issue for me. I wore my hair in a ponytail always - a very long one. No wig looked like my hair. I don’t like the wraps. I love baseball hats but let’s face it - it screams I’m bald!

A big part of my issue is I didn’t want all the neighbors to know because I didn’t want to constantly be talking about it or have my kids fielding questions. In the beginning I wore the wig and everyone told me how much they loved my new hair cut!

In the beginning I didn’t fully grasp how long I’d be bald!

I still miss my hair

Calling all TNs

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