Calling all TNs

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    My D was 29 ... taking 5000 IU/day it is now 66. My naturopathic MD wants it to be above 80

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  • VL22
    VL22 Member Posts: 851
    edited November 2018

    santa- I really believe that it can also be the after effects of chemo. My joint and muscle pains were just so horrible for months after my chemo ended. No problems during, but about a week after my final taxol I was just in pain

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  • HopeBry
    HopeBry Member Posts: 88
    edited November 2018

    Just found out I am Braca Negative. Yay! Im still stuck on the Lumpectomy or Mastectomy decision for a TN. Do most TNs opt for MX when negative for braca gene anyway? Has any TN had a reoccurrence with lumpectomy?

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  • VL22
    VL22 Member Posts: 851
    edited November 2018

    HopeBry - there is no right answer, which is what makes it so difficult. I had a lumpectomy and I feel 100% confident with my decision, especially after a friend of mine had a mastectomy and within a year had a recurrence. But I have a friend who felt a mastectomy was the only way for her and that was 7 years ago - no recurrence.

    Get all the facts you can and make an educated decision that you can live with - easier said than done! I just could not imagine giving up my breast if all my doctors recommended a lumpectomy.


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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    I'm TN, also BRCA negative, and I plan to get a lumpectomy... My understanding is survival is the same as long as you get whole breast radiation after lumpectomy.

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  • sillyoldrabbit
    sillyoldrabbit Member Posts: 124
    edited November 2018

    HopeBry, all of my docs (PCP, MO, and BS) independent of each other recommended a lumpectomy, basically saying what santabarbarian mentioned about the outcome being virtually identical. My PCP also mentioned the higher complication rate with an MX. It's also a long, uncomfortable process if you go for reconstruction. However, with a lumpectomy, it's just about certain you'll need radiation afterwards. With an MX, you might not. I've also read that doctors in different parts of the country vary in their philosophy, with MX's preferred in the south and midwest and lumpectomies elsewhere. Go figure. I pretty much sailed through the recovery period after my lumpectomy, with full range of motion and very little pain. Within 3 days, I felt pretty normal and ready to move on. I know I was lucky, though, and not everyone has it that easy. I hope you are able to reach a decision you are peace with.

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  • KWilli
    KWilli Member Posts: 114
    edited November 2018

    I'm curious if anyone out there had neoadjuvant chemo, then surgery. Did anyone have to have chemo again AFTER surgery? What would be the reasons for that? I'm just about done chemo (YAY!). I am going to have a BMX soon (date to be determined). Not sure what the plan is after that...

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Im going to have chemo oral pill Xeloda after surgery and radiation. Reasoning, the tumor was Partial responded to chemo and still greater than 1cm. Need to reduce my risk of reoccurance..

    Happy Thanksgiving .

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    KWilli

    I asked my doc what he would suggest I do, if I do not have a pCR. If that is the case, there are two follow up chemos he mentioned. One is Capecetabine. There was a second one I forgot the name of. I believe Capecetabine is 6 mos, and it's a pill and what he would favor.

    I am planning that if there is still any live cancer when I have surgery, I want to get it re-tested in case it has morphed and has any actionable targets we don't yet know about.

    My original tumor testing showed high AR+, so that might mean Enzaludamide, which he could give me off label. Little else came back as actionable. I am actually glad I tested it up front (had to pay), because knowing there were not a lot of follow up options has made me more hard core in cleaning up my diet and pursuing all sensible integrative options. From my testing, all I have so far is "equivocal" EFGR expression (a few agents target EFGR, but my EFGR is not high). There are some other specific things I was not tested for. I am wondering about ER-beta, and whether some estradiol might help me? I am wondering about PL-D1.

    Any other ideas to be tested for, from the group??? What has helped you??

    The one and only risk factor I have for BC is DES exposure, in utero. DES is an endocrine disruptor. Hence I am sure something endocrinological is going on that prompted my cancer. Some hormone signaling mishaps that played into the development of my tumor. Little is known yet about DES and TNBC but they are now figuring out that it's a 2 times higher rate of post-menopausal breast cancer, in DES daughters.... again menopause = hormones... So, I am wondering if there might be a 'lost hormone' aspect to what caused my tumor, that estradiol supplementation might help? Something I am looking into.

    Possibly helpful for TNBC and I am looking at... copper chelation.

    Anyway-- thinking along the same lines, and having one eye towards what I might need to do after surgery... but still hoping for pCR!

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited November 2018

    Hello everyone,

    I just wanted to wish all you American ladies on this thread a Happy Thanksgiving.

    Best wishes.

    Sylvia xxxx

    13 years and 5 months since diagnosis

    image

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  • Parrynd1
    Parrynd1 Member Posts: 408
    edited November 2018

    Happy Thanksgiving Everyone!


    KWilli, I did have more chemo after neoadjuvant chemo + lumpectomy. Part of the reason being that I did not get a PCR and honestly barely responded to AC chemo. The main reason for me to do additional chemo was because my lymphnode looked clear on all scans and when biopsies during surgery, however, further pathology came back positive for cancer cells. So, off to TC chemo I went after recovering for 6 weeks. My lumpectomy recovery was luckily very easy and I was out of bed the next day and mostly getting around normal. Worse part is the drains. I felt like an alien, haha

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2018

    Hello All

    Weighing in on the MX vs lumpectomy. 33 years ago on my right side I had a lumpectomy and radiation. ER positive. 3 years ago left side triple negative/IBC. I would have gone with an mx no matter the recommendation, but that was due to a lot of second guessing the first time around.

    I just had a friend recur with only a lumpectomy TN. She was almost 5 years out. She was the one that told me 3 years ago to let them throw the kitchen sink at the cancer.

    You never really know. You have to be comfortable with your decision. You can recur with so many scenarios, or not recur at all.


    Val

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  • helenlouise
    helenlouise Member Posts: 420
    edited November 2018
    Kwilli, I am doing Xeloda like urdrago because I did not achieve pcr. It is way less invasive than IV chemo but you have to remember to take exactly as prescribed. I have had two delays so far because of low neutrophils and my dose reduced by 1000 mg per day. My onc said this is recommended treatment in our scenario. Previously Xeloda was only given to state IV.

    There is a Xeloda thread that is welcoming and helpful.

    Good luck x
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  • Flynn
    Flynn Member Posts: 307
    edited November 2018

    Happy Thanksgiving TN friends! Thanks for your kind wishes, Sylvia!

    Kwilli, I’m also doing Xeloda. I didn’t get pcr but had less than 1 cm of residual so it was really confusing trying to figure out what to do. Because I’m in my 40’s and have 2 young children, my MO is giving my Xeloda outside of a trial (most require 1cm residual). We agreed, in advance, to stop if I really had problems. I’m tolerating it pretty well, so I’m moving along with hopes of stomping any remaining TN cells out. If nothing else, i’ll know that I tried my best. GL to you!

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    Flynn that sounds smart!


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  • KWilli
    KWilli Member Posts: 114
    edited November 2018

    thank you everyone for sharing!

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    here is what my hair situation is 3 months post chemo. I was completely bald with no brows or lashes. Just wanted to share. I don’t even care that it’s grey !! image

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    JEALOUS!!!!!

    Last chemo today!

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    Santabarbar...

    Congrats!!

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  • Vslush
    Vslush Member Posts: 183
    edited November 2018

    Cccmc2,

    You look adorable! Short hair really (honestly!) suits you. Rock it, girl!

    Santabarbarian,

    Congrats on your last chemo .. yay!! And just in time to re-coop a little before the holidays ramp up. Enjoy, and eat anything and everything that FINALLY tastes good without guilt!

    Vickki


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  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited November 2018

    cccmc2, I agree about the short hair looking good! Mine grew back curly and I looked like a fuzzy bear with my naturally round face, especially when the face hair started growing back as well

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    thank you

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  • urdrago71
    urdrago71 Member Posts: 559
    edited November 2018

    Santabarbarian, congrats on finishing chemo..

    Cccmc2. You look beautiful. Your hair looks very thick as well..Was it as thick before ? I didnt know how much grey I ever had since Ive always colored..Im with u, so happy to have hair back..

    Helen, you started Xeloda during rads? How did u feel? Bcuz my MO will not allow me to start Xeloda until after rads is completed.Her response "NO" to hard on ur body. Then i followed up with, how long do I need to heal before I can start. Waiting for response. Also if u have low count do u get injections to being ur counts back up? I did neulasta during AC and granix during taxol.

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  • SA8PG
    SA8PG Member Posts: 371
    edited November 2018

    Sylvia thank you for always checking in and for your encouragement. Congratulations on 13+ years cancer free and theThanksgiving wishes to us in America.

    Hugs

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  • KWilli
    KWilli Member Posts: 114
    edited November 2018

    cccmc2; your 'do is super cute! I'm finished chemo (today; with Santabarbarian)! I can only dream of brows and lashes like yours

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  • cccmc2
    cccmc2 Member Posts: 131
    edited November 2018

    KWiili,

    Congrats! And they will grow! I’ve had mine for over a month now

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  • Flynn
    Flynn Member Posts: 307
    edited November 2018

    Congrats on finishing chemo, Santabarian!! Hope you get in a well earned celebration before surgery!

    Cccmc2, cute hair! Looks like it’s coming in really well :)

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  • Vslush
    Vslush Member Posts: 183
    edited November 2018

    Congratulations KWilli!!! Celebrate and enjoy the holidays knowing that part is behind you!

    Vickki

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited November 2018

    High five to KWilli! So happy we are done with this portion of the ride!!

    Thank you to all the other TNBC sisters for this very supportive thread.

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  • Flynn
    Flynn Member Posts: 307
    edited November 2018

    kwilli, I must have skipped right over your post. So sorry- congrats on finishing chemo!! Good for you!

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