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Androgen Receptor Positive TNBC

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  • vl22
    vl22 Member Posts: 471

    Eve - I got tears in my eyes reading this! I am so sorry you have to be going through this. You’ll find the strength to keep going and I truly hope you get nothing but positive news moving forward. So scary that so much of this crap really does comedown to luck.

  • lightseeker
    lightseeker Member Posts: 36

    Hi VL,

    It's good to cry - I think we are our truest selves when we are crying.

    May we all be lucky!!

    Eve

  • AgathaNYC
    AgathaNYC Member Posts: 317

    Eve,

    I don't know the right words to say in response to hearing about what you lived through as a child. I just wish I could go back in time and protect the little girl you. I hate that this awful disease brings up past trauma. I'm sorry.

    Glad you got through surgery alright, but sorry that the ANB was necessary. Waiting for your pathology has got to be tough. I hope you get clear results. Please let us know.

  • sam0623
    sam0623 Member Posts: 67

    Eve,

    I too am so sorry to hear of the terrible memories this is bringing back for you. Cancer is such a mind fuck, and it seems like whenever you are making some progress there is something else to knock you down. You are strong enough to get through this. The days after I received my pathology from surgery were truly the worst, and I honestly felt like I was on death's door. That was 5 months ago, and all things considered I feel great. You can do this! Give yourself some time to process the shock, I promise you will not feel like this forever.

  • lightseeker
    lightseeker Member Posts: 36

    Hi guys,

    Thanks for the positive thoughts.

    Agatha - it's so sweet of you to want to protect "little Evie."

    Sam - I'm going to believe you; you seem wise beyond your years

    I hope that I have another survival story left to tell.

    I hope that we all do.

    xoxo,

    Eve

  • lightseeker
    lightseeker Member Posts: 36

    Hi guys. Got pathology today. It seems as though, my first sentinel had ITC, isolated tumor cells. Next 5 sentinel were clear. They still opted for Axillary node dissection, removing 16 level 1, 2 level 2. All nodes came back clear. Tumor margins were clear, 0.5mm.

    Due to agressive nature of my cancer, I must do Xeloda, followed by immuno trial.

    My emotions are a Hodgepodge...

    xoxo

    Eve

  • sam0623
    sam0623 Member Posts: 67

    Eve,

    That is really good news on the nodes. I'm sorry they removed that many, but at least you know there wasn't anything hiding away. I am in the middle of cycle 3 of Xeloda and its no biggie- As I mentioned before you will feel better after you have some time to process everything and the plan is back in motion. Its disappointing to have to do more, but now that I'm actually doing it, it is much less disruptive to my life than I expected.

  • lightseeker
    lightseeker Member Posts: 36

    Sam,

    Thanks for the positive vibes. I think my MO is going to suggest Xeloda, after my radiation and then an immuno trial. The only thing with the trial is that it's a crap shoot if you get the med or a placebo. I'm not to keen on that.

    Eve

  • AgathaNYC
    AgathaNYC Member Posts: 317

    Eve - I'm so happy to hear that you had a good pathology report. Sorry they had to do the ANB but at least they were clear. I'm going to pray for you that you don't get in the placebo arm of the immunotherapy trial. What one is it?

    Sam - Thanks for letting us know the first few Xeloda's aren't that bad and not so life up-ending. I'm down to my last Taxol treatment and am looking forward to a rest from side effects.

    Take care ladies!

  • lightseeker
    lightseeker Member Posts: 36

    Agatha,

    So happy that you are done with chemo for now I'm 7 weeks post chemo (2 weeks post op) and other than some surgery pains, baldness, being down two large toenails and some mild nueropathy, I feel like a normal person. I can't wait for eyelashes and brows, so I can wear makeup....it's the little things. I'm doing Xeloda first. When I find out about immuno, I'll let you know. I'm going to MSK next week to meet with Dr Traina for a second opinion.

    Sammy- hope you are hanging in there. I'm glad Xeloda is not kicking your but.

    I hold you ladies in my thoughts. Thanks for the connection...xox

    Eve

  • sam0623
    sam0623 Member Posts: 67

    Hi ladies,

    I'm still hanging in there- feeling great actually. I can't believe I am 6 months post AC-T chemo, 5 months post surgery and 2 months post radiation. I think the time is definitely moving faster now that I'm on the other side of most of this. I still think about cancer everyday, but it doesn't feel as consuming as it did even a month ago. I am still waiting on my additional AR testing, but had a clear brain CT last week so I'm feeling positive.

    Eve, I hope you are healing well. I found surgery to be the easiest part- I was back to exercising as soon as they said it was OK. I did develop some cording in December, but a physical therapist stretched those out so I feel fine again. I think you will really like Dr Traina. I may go back and see her even if I don't get into this trial just to get her opinion on next steps.

    Agatha, I hope you are feeling good after finishing chemo. I know you must be anxious to get the surgery over with, I know I was. I hope you'll update us afterwards.


  • AgathaNYC
    AgathaNYC Member Posts: 317

    Hi, ladies. Just checking in to say hello. Just had my post-chemo mammogram and MRI yesterday. I am so nervous to see just how much my 7+cm tumor shrank with chemo. I don't think I'll get results until I see my surgeon next week.

    Eve - Did you meet with Dr. Traina? How did it go? When do you start radiation? I've been reading about some women you have Xeloda before rads. Whatever your next step I hope it's going to be super effective.

    Sam - Hooray on the clear brain scan! God, I love good news now more than ever. Did you ever get the results of the further AR testing?

    Take care. HAPPY VALENTINE'S DAY!

  • sam0623
    sam0623 Member Posts: 67

    Hi ladies-

    I did finally get the results of my second AR test- today actually. Positive! Not nearly as positive as the first one, but enough to qualify me for the trial. I am so relieved- I know this doesn't really mean anything, but the positive then negative results were rough emotionally. Especially because I had given up my spot in a vaccine trial for this one and that particular trial has since closed. I hated the feeling of not knowing what is next.

    Agatha, I hope you get good news from your surgeon. I wouldn't be too concerned if they say there is something still there via the imaging. I heard scar tissue can look and feel like residual cancer, so try not to worry too much. When is your surgery?

    Eve, I too am curious of what you thought of Dr Traina. I'm assuming she will retest your tumor for AR- I learned through this process there are 2 antibodies they use to test for it and one is a lot better at picking up a positive. It could be the other lab used the one not as sensitive. MSKCC uses both. Also, apparently when they say the tumor is heterogeneous, they are not kidding- clearly some of my tumor was very positive and some not so much. Having the second test might pick up another area of different cells.

    Hope you ladies had a great Valentine's day!

  • lightseeker
    lightseeker Member Posts: 36

    Hi,

    Sam- I just came on to post about my recent AR news and I see that you have some of your own. I'm glad to hear it. I truly understand the disappointment you felt with the second test. It sidelined me, too. So, my second test, same lab, done on removed tumor, was Focally Positive. I believe that this is due to the heterogeneous nature of TN tumors. I will still have to wait to see what MSK says.... maybe, I'll see you there.

    Agatha - good luck with MRI results. The waiting is rough. I've got my fingers crossed for you, xox.

    Last week I went for port flush, and post op oncology appointment. It was hard for me. The doc told me about Xeloda, a PDL trial, etc. I know this agressive treatment is necessary for me....but, it sent me to a dark place. I thought of you two guys fighting, and being brave, and it calmed me. I wanted you to know.

    I hope we all get through this. I look forward to a time when I can laugh effortlessly again.

    xox

    Eve

  • sam0623
    sam0623 Member Posts: 67

    Hello ladies-

    I spoke with one of Dr Traina's nurses last week and I am scheduled to see her and sign consent/start the trial on July 3rd! This means I will be spending the 4th of July in NYC, so if you ladies have any suggestions I am open to them!

    Eve, you will laugh again. Honestly I got through most of today without thinking about cancer- it was a busy day spent with my family doing ordinary things and it was wonderful. You will get there. I was diagnosed a year ago on Valentine's day and I remember last year feeling so much fear, and this year feeling so much hope. This is a long bumpy road, a marathon- not a sprint. The best advice I have is to take care of yourself. Take care of your body, allow yourelf to have good days and bad days, make yourself a priority- a top priority. There is so much research out there showing that taking care of ourselves can be very helpful.

  • AgathaNYC
    AgathaNYC Member Posts: 317

    Just stopping in to say hi and let you know I have good news to report. While the suspicious looking area didn't disappear on my post-chemo scans the tumor looks like a ghost of it's former self. The area shrank significantly and is MUCH less dense. The surgeon was very please. I'm scheduled for a lumpectomy on 3/5 followed by reduction on 3/19.

    Sam - That's great you are starting MSK's AR+ trial! Good luck. I hope it's still on-going by the time I might be ready at the end of the year. You don't live in NY, right? How often would you need to come in? How long is the treatment given in the trial? Is the drug they are testing in pill form or an infusion?

    Eve - How are you doing? I'm really touched that you thought of Sam and me when you needed a little emotional back-up. What happened at MSK?

    Take care of yourselves!




  • TraceyLou
    TraceyLou Member Posts: 6

    Hi Sam - I am actually receiving treatment at MSK also, usually in the West Harrison location. I did not have a good response to the neadjuvant chemo. my tumor actually grew. It shrunk with the AC but not with Taxol and because of that, it also made it's way to 4 of my nodes. ugh i was heartbroken to learn that b/c i only had 2 treatments left. I am glad i escalated though that i thought something was wrong. Anyway, I ended up having mastectomy and super anxious to get back into treatment. Sounds like i'll have radiation then xeloda but i'm curious why it's just xeloda and i'm not getting any other chemo drug with it. i'm so afraid because things move so fast with this awful TNBC. I did request that Dr. Traina be included in reviewing my case because I have heard amazing things about her. Although MO has said Dr. Traina is in the loop, I have lost some fait and am thinking I want to talk to Traina myself to confirm. It's bad if you start losing faith in your MO..

  • TraceyLou
    TraceyLou Member Posts: 6

    Hi Agatha, Eve and Sam - I just want to say thank you. As a new person to join these chats, I am feeling thankful to read your stories, words of encouragement and the genuine support you have shown for each other. It's really helpful. I feel fortunately to have found this site and to be in this with you amazing women.

    PS - I love to laugh and plan to do as much of is as I can!

    xxxx

    Tracey

  • sam0623
    sam0623 Member Posts: 67

    Hi TraceyLou,

    I'm sorry you have to be here, but glad you've found some of this helpful. I think I progressed on Taxol too, but we could never feel my tumor again so it's hard to know for sure. I at least took some comfort in knowing it was finally out of my body and not able to do anymore damage. It was in my nodes as well, so after my masectomy I did radiation and I am almost halfway through Xeloda. My understanding is they usually give Xeloda alone, so I don't know of any Dr that would give you something else with it. I read somewhere that there is not cross resistance between AC-T and Xeloda, Xeloda is in a different category of chemos so just because the others didn't work doesn't mean this one won't. MSKCC normally tests you for AR as part of your pathology. Do you happen to know if you tested positive? If not, I would see what other trials your MO recommends after finishing Xeloda, if you feel like doing more. There aren't a ton of options, but more than I expected due to the increased interest in TNBC.

    Agatha,

    I'm so glad you got good news from your surgeon. Having a response to chemo us such a great sign- I so wish I would have had one 😑.

    The trial is just a pill, so it will be pretty easy to do remotely. I can take it for up to 2 years (the trial is technically 1 year but they will allow you to stay on it for 2 if you want to get you through the peak time of reoccurance). I have to go see her in July before I start, then in August after I have been one it for one month and then quarterly. I live in Michigan, so the travel will be the biggest pain, but atleast NYC isn't such a bad place to visit 😊

    For my first appt my husband wants to come with me, and since I will be there for the 4th of July we figured we would bring our kids and make it a family trip- I'm just not sure what to do, I've never been to NYC in the summer. I think maybe a cruise to watch the fireworks?

  • AgathaNYC
    AgathaNYC Member Posts: 317

    TraceyLou - Nice to meet you.I'm sorry neoadjuvant didn't work as well as we'd hope. Is your cancer AR+? If so I imagine your MO would help you get into Dr. Traina's trial. I'm being treated at MSK and my MO has never discussed adding another chemo drug to Xeloda when i get there. They are all about protocols so it may be their collective opinion Xeloda is best given alone. I soooooo understand the feeling that you want be actively treating the cancer with as many tools as you can. When I was finishing up chemo I felt anxious and depressed - not elated it was over. I'm sorry you are losing faith in your MO. I did lose faith in my surgeon and ended up changing, which isn't easy at MSK!

    Sam - I think it's so great you are going to make a family trip out of it. July 4th is fun in the city, and no hotter and muggier than Michigan probably. I've seen boats in the harbor during the fireworks so I assume there are cruises to book. That would be fun. The fireworks are really spectacular. There's been a renewed interest in Colonial/Revolution-era NYC ever since "Hamilton" hit. I'm sure there are really interesting walking tours if you wanted to keep in the July 4th spirit. There's actually an 18th c. home that's a museum now a couple of blocks from MSK.

  • lightseeker
    lightseeker Member Posts: 36

    Well, isn't this a busy little androgen thread!! Wish we had united under different circumstances but, for some reason, this is our journey.

    Thank you for the support and encouragement that you have always shown me. I think of you often.

    I've been wanting to get on here all week but I've been busy with Doc appts and work.

    I did go to see Dr. Traina and her team on Tuesday. As I had suspected from reading your guys posts, I am following a protocol that she would have suggested. I did sign a release for them to request part of my tumor for pathology testing for AR. I was told to call in a couple of weeks for results. I will let you know.

    I've been super busy the last couple of weeks. I scheduled cataract surgery and tooth extraction to be done between chemo and radiation. This has added to my already busy Dr Appt schedule! I started radiation on Tuesday; I will complete on 4/3/18.

    There are some studies that support radiation and Xeloda concurrently, at the same time. My Onc wants to do Xeloda seperately because she wants to give me Full Dose, which is usually not done when it is given during radiation. There is a rare allergic reaction to an enzyme in the Xeloda, called PDP. I have requested to be tested for it; not sure if my Insurance will pay but, I'll let you know. My Onc will be running a PDL trial and wants me to consider this when I have completed Xeloda. I know that they can test for the PDL protein; however, I believe that they give Keytruda regardless of the presence of the protein, or not. I will have to decide this; It is a trial so the control arm does NOT receive the Keytruda - not sure how I feel about that. The AR trial with Dr. Traina might be better (If I am AR+) because everyone receives the Enzalutamide. I am hoping that I could receive treatment in Rockville Center, as opposed to Manhattan. We'll see.

    Sam - I'm so glad that you are feeling hopeful. I'm glad that you are taking care of yourself and enjoying your life with your kids and hubby. I hope that you guys have a great Fourth of July in NYC! I love the idea of a fireworks cruise.

    Agatha- I'm so happy to hear that you got a good response to chemo. I know that you wanted the lumpectomy. I had lumpectomy with the reduction done concurrently. I did have the unexpected Axillary Node Dissection; I think most of the pain comes from this. As Sam has said, and I agree, surgery is the least difficult part of the process. Post-op pathology is probably the hardest part of the process. My thoughts are with you.

    VL - I haven't seen you back to the thread - hope all is well.

    Tracey- Yes, due to our AR/MSK connection, we have been here for one another through the ups and downs of this fucked up journey. I hope we can be here for you, too.

    xox

    Eve

  • AgathaNYC
    AgathaNYC Member Posts: 317

    Hello, ladies.

    My lumpectomy is in the morning. Please send your positivity towards my operating room! Thank you Heart

  • sam0623
    sam0623 Member Posts: 67

    Hi ladies-

    Eve, when I had radiation I specifically asked my RO and MO about concurrent Xeloda and the RO said 2 years ago he would have been for it, but now he doesn't recommend it. It is a lower dose, and apparently can make the side effects (ie burning) from radiation worse so he didn't think it was worth it- so I had plain radiation and regular dose Xeloda afterwards. I also asked my RO about calorie restriction which was something else I read about with radiation, and he definitely wasn't for that either. They actually want you to eat a little more and NOT lose weight during radiation.

    I am officially half way finished with Xeloda! I finished cycle 4 on Friday and will start cycle 5 on Saturday. It has truly been uneventful- it honestly doesn't feel like I am on anything. I feel badly for the women who have to dose reduce because of the hand foot syndrome- I'm not sure how I got so lucky with this one, but I'll take it.

    Agatha, I will be thinking of you tomorrow and sending positive vibes. I think you are going to think surgery is a walk in the park compared to what you've already gone through. Fingers crossed for awesome pathology a week from now! You will probably at least know a little tomorrow depending on if they have to take nodes and how many.

    I hope you ladies are doing well. I've found my anxiety to be a little high the last couple of days- I think because I started chemo a year ago this weekend. This is all such a rollercoaster- I worry so much about my kids growing up without me- it's so hard.

  • lightseeker
    lightseeker Member Posts: 36

    Hey guys - I've been checking this thread for you all week. Glad you came by.

    Agatha - I've been thinking of you all weekend. I was hoping you had worked out things for your friend to come and help you out, if you need it, after surgery. If you avoid Axillary Node Dissection, pain should be tolerable. If you have pain, take your meds - don't be a trooper. Drink lots of fluids and ambulate around your home every couple of hours. I'm actually an RN. I've never practiced though. I went to school at night right before turning 50; it's how I found my lump - while learning about breast disorders. Ain't that a kick in the ass.

    Sammy - you have got to beat this shit. I think about that often. My heart breaks for you because I know what your worrying involves. I'm so glad that xeloda has been easy for you. I hope that Agatha and I are just as lucky.

    I will be checking my androgen status on Tuesday; I will post then

    xoxo

    Eve

  • AgathaNYC
    AgathaNYC Member Posts: 317

    Hello, ladies.

    Your positive vibes did the job! The sentinel nodes were negative for any cancer! I'm very relieved about that. Still a little uncomfortable but I'm definitely on the mend. Tuesday I see my breast surgeon to get the pathology results. I'm optimistic that she got clean margins but a little afraid to dare to hope I get a pCR.

    Hi, Eve - did you get your androgen status?




  • lightseeker
    lightseeker Member Posts: 36

    Hi,

    Still no news on my AR status. I'll post when I know.

    So glad you avoided AND. It's nice to catch a break, every once in a while.

    Fingers and toes crossed for good pathology report.

    xox

    Eve

  • sam0623
    sam0623 Member Posts: 67

    Hi ladies-

    Agatha, I'm so glad to hear you only had to have a SNB. Fingers crossed for great news on Tuesday!

    Eve, it took awhile for me to get my AR results from MSKCC. I called once a week for 3 weeks and they kept telling me it would be anyday.. They never called, I ended up finding out the results myself (both times) on their online portal. If your inpatient like me it might be worth it to sign up to check for the results yourself 😊 I totally get that they are busy, but us cancer patients aren't exactly the most rational people.. haha.

  • lightseeker
    lightseeker Member Posts: 36

    Hi guys,

    I called MSK at 2 weeks, as told, no results. They said they'd call. I guess I'll try to figure out online portal 🙂

    Hope you guys are hanging in there.

    xox

    Eve

  • AgathaNYC
    AgathaNYC Member Posts: 317

    The MSK portal is great. It couldn't have been too hard to set up if I could do it :-P

    Guess what. I just got back from the breast surgeon for my post-surgery follow up. I got a pCR! I can't believe my scary 7+cm tumor completely responded to chemo. I wouldn't even let myself hope for this outcome.

    Radiation is next.

    I see my oncologist on Friday - I assume I'll still be doing Xeloda, but I don't know.

    I truly hope that you guys will soon have this feeling I'm experiencing today. It's been a sucky 6 months - first time I cried happy tears.

  • lightseeker
    lightseeker Member Posts: 36

    Agatha-

    So happy for you!

    Eve