Calling all TNs

simplelife4real

Hi everyone! It's been at least a month since I posted here. Welcome to everyone that is new. It's always saddens me to hear of another on diagnosed with tnbc, but this is a great place for support.

laika_in_space, I wanted to specifically address your question about residual cancer in the lymph nodes after neoadjuvant chemo. Like you, I did have residual cancer (in two nodes and no residual cancer in my breast). People like you and me are at a higher risk of recurrence, but it is NOT a death sentence. I just passed the 2.5 year mark a few days ago and I'm doing fine.....no sign of recurrence. It's scary in the beginning knowing that we had residual cancer in our lymph nodes, but with each day that passes, our chances of not having a recurrence gets better and better. All I can say is hang in there....it does get better.

Ally, I'm so glad to hear your bumps are fat necrosis. We LOVE fat necrosis!

Wishing the best for all my wonderful TNBC sisters.

Shopgal2

asrescue I also had my tumor found 6 months previous and was told to wait and they would be monitoring it. I was not happy and insisted on a biopsy then. My bs at the time wouldn't do it because at the time the tumor was small,sat on my chest wall, and they said it was benign looking. Needless to say 6 months later my benign looking tumor doubled in size and was malignant. That bs was no longer my treating surgeon and I moved forward with a great team at a major cancer hospital. And yes I too led a very stress filled anxiety ridden life before dx. Now I try to appreciate the little things in life. I have lost 23lbs, eat clean and healthy, and exercise 2-3x a week at a gym. If I feel the old stress and anxiety taking over my life I now take a Xanax to help.

Haus glad your first ac went well. The first for me was a lot of nervous feelings not knowing what to expect. After that I knew what my SE's were going to be. As for constipation stay on top of it. Stool softeners helped me at first then I switched to senacot. You will find what works best for you. And definitely work with your team and nurses. My nurses were the best about giving me advice on how to treat my SE's.

NancyHB

HausFrauMI - we're just down the road from each other. 😊 I hope you're doing well. I'm curious about the Neulasta button too, and will ask about it tomorrow. I'm pretty sure my clinic doesn't use it but it would make my life (and work schedule) so much easier. I'm already stocking up on Claritin; I had a lot of bone pain with Taxol + Neulasta until I really committed to the Claritin.

I spent the day getting a second opinion at UofM yesterday and it was interesting and enlightening. Met with the PS and found out I'm a good candidate for flap surgery (I can thank my kids for that). Their tumor board met, and their pathologist reviewed my slides, my original slides, and my Oncotype test (first time earound) and they believe I have a local recurrence of my first cancer. My original tumor was 50% ER+ and 10% PR+, so they explain that because of that, some of my cells were already TN. But any ER+ is treated as positive in order to treat with Tamoxifen. So some of those nasty little TN buggers survived chemo and radiation targeted boosts...and came back. So I have no stage now, but rather am Stage 1 with local recurrence.

I'm still trying to absorb all of this information. It feels scary (but then again, what about BC isn't?). Must. Not. Google. UofM indicated it would be harder to treat, but is still treatable so we move forward and do what we can. Guess that's all I can hope for.

Valstim52

Hello All

I love this thread I will participate fully.

bluedog

Simplelife, congratulations on your 2.5 years!! Thanks for the encouraging words!

Allydp

I have a lot of catching up to do, but I'd like to say welcome to all the newcomers. Lots of Michiganders lately, so howdy neighbors. I'm sad to see so many of you here, but this is a wonderful group!

lovelifeBR

Kayak:

thanks much--I registered for the session as well.

HausFrauMi

Nancy if the button is avail I highly recommend! Saves a trip to the doctor!! And it wasn't in the way for the 28 hrs.I think I prefer belly to arm because I can see it myself and monitor it.

CarolinaAmy

azrescue--welcome! I'm sorry you had to find us.

Your kids will be all right even though it is a rough experience for everyone. Mine were 9 and 5 as well when I was diagnosed (have since turned 10 and 6). I keep an eye out for them, made sure to let the school know what is going on (they have been amazingly supportive to all of us), and the children will, I think, be stronger and more compassionate for it.

I mentioned something a few days ago about being concerned about stuff I'm finding out about BMX vs. LX. Ugh. So here's what I finally emailed my surgeon this morning, along with his response. I really don't feel like my question was answered, though.

Good morning, Dr. ______.

I had a couple of questions I hoped you could answer just to reassure my mind. I unexpectedly came across a study that surprised me and wanted to know your thoughts on this vs. the study that showed potential improved outcomes with mastectomy for younger TNBC patients. I remember seeing this study some time ago and dismissing it for some reason, and I’m hoping you’ll be able to say, “They’re idiots and didn’t factor in that later stages are more likely to undergo mastectomy but also more likely to have reduced overall and disease-free survival.”

http://www.ncbi.nlm.nih.gov/pubmed/21670451  

Also, is there any possibility I’m putting myself at potentially GREATER risk of recurrence (distant or otherwise) by choosing mastectomy rather than lumpectomy? Occasionally I have seen mention of the idea that the body’s healing response to a serious surgery such as mastectomy may be itself oncogenic (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171628/). I’m hoping I’m misunderstanding this.

Thank you so much for your time and any guidance you can give me.

Sincerely,
CarolinaAmy

And here's his response this evening:

Hi Amy,

Interesting but just one study.

I would not over read it.

There is always some risk of complications and reduced immune function with more surgery but you are young and healthy and should do well.

Kind Regards,

_____ __________

I appreciate him writing back....... but this really didn't answer my questions. Please help me.

Luvmydobies

Amy for some reason I couldn't get the second link to open up. I'm having to use my phone because our computer is acting wonky. This is going to sound stupid probably, so forgive me as I just woke up and am sleepy, but are you saying you read there's a higher chance of recurrence or mets in women who have had a mastectomy vs those with lumpectomy and radiation? This really makes me even more scared than usual! Sorry I haven't caught up with all the posts because my family is visiting. I had a double mastectomy then chemo and they said I didn't need radiation.

chambo

I vaguely remember this study and talked with my MO about it. What he said is many opt for mastectomy w clean margins and then do not have rads OR chemo --- so no follow up treatment. My stepmom is one. She feels confident they got it all, so "why put my body through anything else". She had a BMx and opted for no rads/chemo even though her MO suggested one or the other as follow up to be safer. Those who were getting lumpx only were tending to get a follow up tx "just in case" for the microscopic cells.

So it makes logical sense to me, that if you cut out the cancer, but there are microscopic cells remaining, and you do nothing else about them - one way or the other - you risk a higher rate of return.

Allydp

Amy, I've really debated responding because I don't like to talk studies on the thread. For me, they always bring up fears and I hate to do that to others. But I can tell you're scared and having a really hard time with this decision so I'll tell you what I learned during my research. I myself had to have a BMX since I'm BRCA+. But as you know I'm also a researcher and what I learned was it's not necessarily the BMX or LX that causes better or worse outcomes, it seems to be the rads. Those who receive rads after MX, regardless of node status, do better. This is why I AGONIZED over rads. I was node negative, so by all accounts did not need it based on today's standards of care. However, I found multiple studies saying those who had a BMX followed by rads, who were node negative, did the best in terms of overall survival. Those who did not have rads did the worst. Even worse than those with positive nodes. Again, this was thought to be because of the rads. So...you'd think the rads would have been a no brainer for me right?! No. I had 4 opinions. I even spoke with multiple doctors at Memorial Sloan Kettering thanks to a good friend who works at the breast center there. It didn't make any sense because the risks far outweighed the benefits for me. This was mostly because I had a pCR. If I had not had a pCR, I would probably have done rads. To this day, I still question this decision. I'll see if I can find those studies and PM them to you, but try googling radiation after BMX node negative.

Edited to add: Those studies all concluded that today's standards of care should reevaluate who receives rads...and possibly many more patients would benefit regardless of BMX, LX or node status.

Luvmydobies

Ally, mybreast surgeon, medical Onc and a radiology Onc all said I did not need radiation because of the negative nodes and good margins with surgery, and the risks were too great so I trusted them but studies like this obviously prove otherwise! I can't undo what's already been done though. I'll never know if I had a PCR because I had surgery before chemo. That's another decision I regret now that I know more, but oh well, nothing I can do about that either! I still have intense fear of mets every single day. It sucks but it is what it is.

Allydp

Luv - same here. I feel like it is what it is. We made the best decisions we could at the time with the information we had. We have to trust in that and trust in the doctors. They talk like TNBC overall survival is terrible, but in reality it's not. Compared to other types, it's marginally not as good, but it's not as dismal as they make it out to be. I also think there are so many studies out there. You can find practically any study to support any topic...which is why I hesitate to post small scale studies. Sending you love and hugs. We're going to be okay. The odds are in our favor.

WannaCruize

I guess this is where I belong. I'm thankful for finding this thread, and I've been reading it obsessively for the last couple of weeks. I'll explain a little bit about myself by way of introduction. I've cross-posted this on the March 2016 chemo thread, but some of my questions may be answered by the ladies here.

I'm 56, and married for 37 years to my best friend. Our daughter, Tami, was diagnosed in 2012 at age 32 with Stage IV IBC (ER+,PR+,HER2-), no family history of breast cancer and very active and healthy. She lost her battle last November when it overwhelmed her liver. Then 2 months later I was diagnosed, but a completely different profile than hers. Mine is IDC, Stage 1a, and triple-negative.

After seeing the battle up close, I'm treating my cancer aggressively, because I want no regrets. I had my SLNB & BMX two weeks ago, with wide margins and no node involvement, no need for radiation. (finally some good news) I will start Chemo in March, just waiting on scheduling for my start date. My MO has prescribed Taxotere & Cytoxan (TC) every 3 weeks for 6 rounds, and then I'm done.

Because all my research had been concentrated on my daughter's profile, I had to start completely over. I'm very much at peace with the decisions I've made so far, but have a few questions for everyone here:

1. Port or No Port: How hard is CT on the veins? Since I had SLNB on the left, I can only use the right side. Tami resisted a port for her first go-round with AC/T, and it shredded her veins. When she had to return to IV chemo again, she did get a port, and regretted not getting it earlier. However, she was basically going to be on Chemo forever. In my case (hopefully), it's 6 rounds and then I'm done.

2. My MO has prescribed Xarxio - which is a newly approved 'biosimilar' form of Neupogen. Looks to be a pre-loaded syringes that I'm to inject starting 24 hours after chemo for 6 days. I searched for the name here and didn't get any results, but wondered if anyone else has been using this? I'm going to assume that since it's similar to Neupogen, that taking Claritin may help with the bone pain.

3. I'm going to try icing my hands & feet to avoid neuropathy. I work in IT on the computer all day, and walk for my exercise. I've ordered one set of the mittens and slippers, and am going to see if I can create extra inserts to swap out, rather than buy more sets. I'll know more once I receive them and can 'see' how they work. Anyone have any idea how long the TC infusion generally takes?

I guess that's it for now, good luck everyone.

chambo

WannaCruize… - Hi there - my condolences for the road you've been down with your daughter and the journey you are now on.

I am taking TC now myself and also work in IT. I was worried for the same reasons. My MO said that Taxotere (the T of TC) is not nearly as neuropathy-inducing as Taxol - the other T. I had the first full dose on 2/16, and while I've had all the normal side effects, I've had zero tingling, pins and needles or any issues with my hands or feet. Since chemo is cumulative, this may change, but so far so good. (I wore flip flops to the infusion room just to keep my feet a little cold - just in case...lol). The whole infusion process from pre-labs, pre-meds, to kicking me out the door was about 4 hours. I felt fine that day but was a little loopy from all the anti nausea and steroid stuff. I am guessing your Neupogen is the once-a-day equivalent to our time-released Neulasta - that's probably why you aren't finding it on here.

I chose a port. I have uncooperative veins when I don't feel good - and again, with the cumulative effects, I'm guessing my veins will become less cooperative over time. It was easy considering everything else that's been done.

Keep in touch.

Cocker_Spaniel

Welcome to all of our new ladies. Wow you go away for a short holiday and the thread gets so active.

LUV and Ally I had mastectomy surgery first before chemo and the first thing my surgeon, whom I trusted completely, said to me when I woke up from the anaesthetic was "I am confident I have given you an excellent margin". Because of my job I knew this was crucial to my outcome. I did have cancer in four nodes as well so all of my nodes were taken out hence the LE. I also had radiation because of the node involvement. I don't regret my mastectomy decision and I don't regret the radiation because I did what was necessary at the time. As you say Ally it is what it is and the odds are in our favour. I know girls that had positive receptors with no node involvement and early stages that have taken tamoxifen or arimidex and have still had recurrences. It is what it is and regret is pointless. I am not interested in the studies. They all paint pretty pictures of a cure being just around the corner but nothing seems to come of them or they are five years or more down the track. My mother and grandmother died of cancer all those years ago and still there is no cure only improvements in treatment. We need a cure now so what the hell are they doing with all the money that has been raised for scientific research. I will not read anything about recurrences because I feel it doesn't help at all. It stops us enjoying what time we have now and only brings more fear, and anxiety and messes with your head when we just don't need it, whether just diagnosed, half way through treatment or at the end of treatment. As you say Ally, we are going to be ok.

Well my little dog Tessa, my golden cocker spaniel, is not ok. She has been vomiting and had diarrhoea and now has a big swelling in her tummy. So we are off to the vets today. My mind keeps racing and I can't concentrate on anything with fear I may lose her. I absolutely adore that wee dog and the thought of losing her is terrifying. So please keep me and my Tessa in your prayers.

Allydp

Oh Cocker - your sweet Tessa is in my deepest prayers. Please, please keep us posted. xoxo

Mamiya

Wannacruize,

I am also sorry to hear your story and sad that you've lost your daughter and now have to face this yourself (although a MUCH better set of stats, the earlier stage definitely a plus and TN can often be very responsive to chemo).

here is a site that may help you decide on port or no port. The drugs that are vesicants would be the hardest to have without a port but the two that you are set to get are listed as "irritants" so maybe not so bad: http://hemonc.org/wiki/Vesicant_%26_irritant_chemo...

I have had many rounds of chemo and will have many more so I am forever glad for my port, but you may not need to get one for only six.

Luvmydobies

Cocker praying for you guys and sweet Tessa!! You're words are always soooo comforting!! Thank you!

WannaCruize I'm so sorry to hear about your daughter. (((((HUGS)))))! I would go for the port if I were you. They're a bit uncomfortable at first, but it saves your veins! Keep us posted on how you do. Sorry you have to be here but it's a great place!!

Cathytoo

Cocker Spaniel...I read your post with mixed emotions. Encouraged that you are five years out from your initial diagnosis...BUT, sad to read about your beloved dog. Hoping to read tomorrow that all is well with her.

LoveMyVizsla

I took neupogen during my first round and took Claritan. Had no pain whatsoever. Took one shot of neulasta last time and had two days of "don't even touch me" muscle pain, even with the Claritan.

Hoping Tessa is okay.

Shopgal2

Amy what allydp says is so true. We make the best decisions with what info we have at the time and put our trust in out teams to carry us safely in their hands. I too agonized about my surgery decision. A lot of my tumor was removed at my biopsy before I even saw a surgeon or knew I was tn. I was brca negative and still was conflicted about bmx or lx. My cancer was small at 9mm and node negative. I still question if I did the right thing by keeping my breasts as a tn. I see so many of us tn gals do mx or bmx and few do lx I do feel better knowing I have had an extra layer of treatment with rads, but lx plus rads is as effective as mx. Please ease your mind and you will know your decision. Prayers for you my friend

Cocker my heart goes out to you and your fur baby.

Meadow

Wannacruize, Welcome. And my condolences for your loss of your daughter. So sorry for your diagnosis, especially so soon after such a loss. I hope you get much comfort, support and information here. As for the port...I think you will be more comfortable with it in the long run, and it is one less thing to sorry about. I really hate needles, got much better about it being stuck all the time during treatment, but I love my port. (Still have it).

Cocker, so hoping things with Tessa are better. Update us when you can.

Hugs to all the newbies, the not so newbies...and everyone!

Cocker_Spaniel

Took my wee Tessa for her scan today and I have never hated cancer so much in all my life. She has cancer in her liver, kidneys and spleen. There is nothing they can do for her but as she is still eating relatively well and enjoying short walks I did not feel that today was THE day. The vet agreed and said take her home and enjoy her for the time you have left, you will know when its time. If she starts vomiting again, I have her on chicken and rice or chicken and pasta and veges, then that will be the time. Its breaking my heart. I love her so much and just cannot think of a time without her. She is by my side all the time and I'm watching her like a hawk but I'm blinded by tears every time I think of what will soon come. If you can't pray for me then please pray for my girl Tessa.

Luvmydobies

Cocker I am so sorry to hear about Tessa. I will definitely keep you and her in my prayers! I can't find the right words right now. I will say DAMN CANCER though! Sending you and Tessa a big tight hug with tears in my eyes! So sorry

6feetover

Cocker: *MASSIVE HUGS* to you and Tessa!

SA8PG

Oh Cocker

I'm so so sorry. Your sweet Tessa.

Prayers for her & you as you spend time together. Our animals are such blessings to us & from what you have shared,Tessa is a true gift from above.

My thoughts & prayers are with you.

G

Lookingforward66

Oh Cocker,

So sorry to hear about your sweet Tessa. It is so sad that our little four footed folk get this Cancer Crap too. They don't know why they hurt. Lost my four footed fur baby little over a year ago. I knew it was Cancer as she was fine but lost weight fast. Then one day, I knew. She died in my lap & I miss her all the time. My prayers for you both. She will be waiting for you to join her again. Just don't plan on joining her soon.

Hugs to you, & light belly rubs to Tessa.

Marsha

JAN69

Oh Cocker, Words cannot tell how sad I feel for you. I feel your broken heart and fear. As your have read above, you have all our love, support, understanding, and warm hugs. May the next few days bring you strength as you prepare to let go. My love, Jan