Kadcyla for residual disease after neo adjuvant chemo

neeli
neeli Member Posts: 73

Hi All,

Starting a new Kadcyla thread as there wasn't one before. I will be starting Kadcyla soon as there was residual disease from surgery pathology report. Kadcyla for 14 cycles is what is recommended. Any of you who have already been on Kadcyla please share how it is going for you.

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Comments

  • paloma1211
    paloma1211 Member Posts: 95
    edited October 2019

    Thank you for starting this thread neeli! I had my first Kadcyla infusion yesterday. We did a “slow” infusion (90 minutes + 90 minute observation) for the first one. My MO said that future infusions will be approximately 30 minutes. So far, so good. I feel fine today - pretty much the same as I’ve felt lately (read: tired).

    My story: I had neo-adjuvant TCHP (6 rounds) for my triple pos BC. Finished chemo early June. Lumpectomy was early July. The tumor had shrunk considerably (from 3+cm down to 7mm), but there was residual cancer. SNB was negative, though in the original biopsy there was cancer in the node. Began Herceptin only treatments. Started 30 rounds of radiation in early August & finished mid-September. Herceptin continued, but my MO said she decided that she wanted me to change over to Kadcyla. Going to to the full course of 14 rounds, and eventually start hormone therapy.

    Fingers crossed that SEs are minimal!!

  • Adhoney
    Adhoney Member Posts: 65
    edited October 2019

    Thank you Neeli!

    I also did TCHP x 6 neo-adjuvant Chemo, my tumor went from 23mm to 6mm. I began Kadcyla on 8/12/19 & then started Anastrozole 9/3/19. In the last few weeks, the muscle & bone aching has just about driven me mad. According to medical drug databases I have access to (I'm a nurse practitioner), these can be side effects from both K and Anastrozole. I stopped Anastrozole on 10/25 to take a brief break....my choice, I haven't told my doc yet. I'm still waiting to see if I feel any better off that med then I'm going to start back on Anastrozole but from a different manufacturer to see if that makes any difference.

    Starting both meds so close together has made it challenging.

    Angie


  • countca04
    countca04 Member Posts: 33
    edited November 2019

    DOING MY THIRD KADCLYA NEXT WEEK....

    side effects consistent .....on Day 2, 3 and 4 feel very tired, nauseous and just unwell

    Then the days after most days feel good but the tiredness from rest of treatments (like radiation, surgery) is still getting me down.


    Good luck

  • MKEMom
    MKEMom Member Posts: 2
    edited November 2019

    Thank you for this string!! As I was evaluating the EBC adjuvant treatment plan of Kadcyla given the Katherine Trials, I just didn't see a lot of us yet posting our experiences. Just started Kadcyla yesterday for the first of 14 cycles. 90 minutes infusion with limited observation afterwards. Agree with countca04, nauseous and just an unwell feeling here on day 2. However, initial side effects much easier than full Chemo treatments. Will try to provide periodic updates as I go through the treatment.

  • FNPMom
    FNPMom Member Posts: 43
    edited November 2019

    Hi All, Thank you for this thread - started my kadcyla 11/08/19 - had a 4.3 cm IDC/DCIS right breast mass that went down to 1.1 cm after neoadjuvant chemo - per onco, my liver enzymes are elevated - worries me a bit as on a CT (for the DIEP procedure) they saw a lesion on my liver (radiologist noted no need for further imaging) a prior PET was negative - maybe it’s the Tylenol/naproxen I took post surgery - still achy but stopped all that yesterday- doing labs in 3 days

    Adhoney- I wish I did cold capping - my hair has grown but is quite sparse - I can still see my scalp - I look like a hairier tweety bird lol


  • moderators
    moderators Posts: 8,504
    edited November 2019

    Dear MIKEMom,

    Welcome to the BCO community. Thanks so much for reaching out and sharing your story here with our members. We hope that you will benefit from the support and information readily shared here on the boards. Please keep us all posted as to how things go for you. Let us know if we can be of help.

    The Mods

  • dvhmouse
    dvhmouse Member Posts: 130
    edited November 2019

    Neeli, please keep this thread going! I finished neoadjuvant chemo in October, had UMX and DIEP last week (11/13/19), and now I’m waiting to see if instead of every three week H+P, I may be starting Kadcycla, depending on the pathology results.

    Thanks,

    Diane


  • paloma1211
    paloma1211 Member Posts: 95
    edited November 2019

    I had Kadcyla round 2 yesterday. 30 minute infusion, 30 minute observation. They said that will be the procedure going forward. So far I feel fine. Felt tired last night but slept fairly well so I'm ok today. We'll see how it goes.

    Don’t worry about your hair growing back in - it will come, slowly but surely. Here’s my progress pic - I finished chemo in mid-June.


  • paloma1211
    paloma1211 Member Posts: 95
    edited November 2019

    Don't worry about your hair growing back in dvhmouse - it will come, slowly but surely. Here's my progress pic - I finished chemo in mid-June.

    image

  • Adhoney
    Adhoney Member Posts: 65
    edited November 2019

    FNPMom

    My husband & I worked so hard with the cold capping to save my hair & i’m Glad I did it. Unfortunately, my hair starting thinning significantly after about a month of being on Anastrozole. I mean I can see through the hair that hangs past my shoulders. With the thinning & then the new growth (2 inches in length) on my crown because it had gotten thin due to me not getting the cap snug enough during cold capping, my hair is a hot mess right now. It doesn’t really bother me at this point with all I’ve been through, but I’m sure that people notice my hair is kinda wild!! I’m hoping to get in to see the girl that cuts my hair soon because I think a new shorter hairstyle is in my future!

    I’m due for my next Kadcyla Infusion on Monday. Since I’m on a break from Anastrozole, I’m gonna see how this Infusion makes me feel. I swear the two together were out to get me with all the aches & pains. I’ll find out Monday what my MO’s thoughts are on restarting the AI. I’m not looking forward to taking that little pill again.

    Angie


  • FNPMom
    FNPMom Member Posts: 43
    edited November 2019

    Paloma 1211, thank you for the pics, your full head of hair fills me with hope - mine looks like the Aug pic right now 😊 and that looks about right per your timeline; my last chemo was 09/13

    Angie, so anastrozole also thins hair/aggravates kadcyla S/E -I have achy joints right now- my onco plans to transition me to that after a year on tamoxifen (starts on 12/6) as my uterus has multiple fibroids and I voiced concern of it being “active" like my fibroadenoma producing former breasts - I don't want endometrial cancer - another surgery for a hyst is just too daunting to contemplate right now but that's not off the table if needed - I hope your MO manages your regimen to where S/E are not as harsh

    My next dose of kadcyla is on 12/6 if liver enzymes are fine tomorrow - hang in there ladies, we got this - and I thought delivering my 1st born without epidural gave me the ultimate bragging rights lol 😂

  • Projecteddreams
    Projecteddreams Member Posts: 7
    edited November 2019

    So I'm new to the forum. Looking for some support. I had the first part of my pathology report from surgery last Thursday. Oncologist is stopping Herceptin and Perjeta and I'm starting Kadcyla in a couple weeks. The tumor had not shrunk, still 7cm and they found 10/21 lymph nodes positive, thought at time of first PET scan that only 6 were involved. I have lymphovascular and perineural invasion. My oncologist up to this point has had a very sunny and positive disposition and at our appointment this week he seemed deeply concerned. I got upstaged from 3a to 3c. He told me that TDM-1 will work 'great' but that's what he said about TCHP. Can someone guide me to research or testimony of people who responded well to TDM-1 and radiation at this stage in the game? I just don't know what to think about the future. Thank you! 💪🦅

  • neeli
    neeli Member Posts: 73
    edited November 2019

    Projecteddreams - Hang in there. Kadcyla instead of H&P is known to be a better choice at this time. how much ER PR percentage positive are you? May be you will respond to hormonal treatments. You must have had axillary node dissection right?

    Regarding TCHP, even i was told the same. Somehow i think AC chemo probably would have been strong enough. some people get combo of AC and THP.

    How old are you?

  • Projecteddreams
    Projecteddreams Member Posts: 7
    edited November 2019

    Thank you Neeli. I am 41 yo. The original biopsy showed ER-90 & PR-90. The surgical pathology report is still pending for those. They removed 21 nodes. He’s going to give me a monthly shot of Goserelin until they can remove ovaries. I’ve been feeling like my hormones have been shut down and I thought that’s what Herceptin and Perjeta do

  • neeli
    neeli Member Posts: 73
    edited November 2019

    Projecteddreams - H&P takes care of her2 not hormonal. kadcyla is herceptin + chemo. For me hormonal treatment will be after radiation. Keep posting, wishing you the best.

  • Projecteddreams
    Projecteddreams Member Posts: 7
    edited November 2019

    yeah I misspoke and knew it right after I sent it! Ugh. Anyway the new path came back and now it’s ER >95 and PgR negative. I guess things can change. KI 67 is 20% which is down from biopsy of 67%.

    Have you started radiation? How is that going? Bless you you’re only 35? I hope you live with support and know you’re loved! 💕

  • FNPMom
    FNPMom Member Posts: 43
    edited November 2019

    projecteddreams - kadcyla is indeed better than herceptin; kadcyla, herceptin and perjeta work on the HER2+ component of our cancer

    Here are some key points of the Katherine trial which highlighted the superiority of kadcyla over herceptin

    • Substituting T-DM1 for adjuvant trastuzumab (herceptin) in patients with residual disease after receiving neoadjuvant chemotherapy and trastuzumab reduced the risk of developing an invasive recurrence of HER2-positive early-stage breast cancer by 50%.
    • Invasive disease–free survival events occurred in 12.2% of patients in the T-DM1 arm, compared to 22% in the trastuzumab arm.
    • Secondary efficacy endpoints of disease-free survival and distant recurrence–free survival interval also showed clinically meaningful improvements with T-DM1 relative to trastuzumab


    Goserelin, tamoxifen (used if women are pre-menopausal) and aromatase inhibitors (after menopause) work on the hormone receptors - studies have shown that AIs are better than tamoxifen.

    I hope that helps - my onco will put me on tamoxifen for a year then to AIs if my ovaries remain inactive - chemo stopped my periods on the 3rd round - I think I may have to have my uterus/ovaries removed at a certain poin

  • neeli
    neeli Member Posts: 73
    edited November 2019

    projecteddreams - I remember reading somewhere that reduction of ki-67 is a good prognosis factor. Is it grade 1 now? I wonder how the ER even went up. so your ki-67 came down but the tumor didn't shrink at all? what about in nodes? did it show any response? My report is still pending. I will be starting with radiation soon.

  • Projecteddreams
    Projecteddreams Member Posts: 7
    edited November 2019

    neeli, the tumor stayed the same and there were more nodes involved than on the first scan. I think the KI-67 score is the best positive thing I can see about the report so far.

  • Projecteddreams
    Projecteddreams Member Posts: 7
    edited November 2019

    FNFP mom, thank you for the information, sounds like some good responses!

  • Dkrusick
    Dkrusick Member Posts: 6
    edited November 2019

    Hello everyone this is my first post. I did my first treatment had double mastectomy and reconstruction. I was on kadcyla for 6 rounds my vision is bad have crystal deposits in both eyes and my feet are killing me of pain. He is putting me back in the two antibodies till March. My biggest concern is does anyone feet hurt? Not tingle or numbness...just hurt like someone crushing your bones?

  • moderators
    moderators Posts: 8,504
    edited November 2019

    Dkrusick, we welcome you to our community. What does your doctor say about your feet hurting. It sounds so uncomfortable. We hope you hear from others, but glad you shared with us.

    Medicating The Mods

  • Dkrusick
    Dkrusick Member Posts: 6
    edited November 2019

    He is looking in to it. I was on gabapentin but that didn't work. Now looking into physical therapy. Just wondering if anyone has had similar symptoms

  • minustwo
    minustwo Member Posts: 13,278
    edited November 2019

    Dkrusick - check out the Neuropathy threads. Lots of us have permanent CIPN - some with lot of pain and some manageable.

  • neeli
    neeli Member Posts: 73
    edited November 2019

    Dkrusick - i have pain in my feet and in my fingers. After 1 infusion of kadcyla. No tingling just pain. Haven't spoken to my MO about this yet.

  • Dkrusick
    Dkrusick Member Posts: 6
    edited November 2019

    Ok I will look into that MinusTwo. Thank you

  • Dkrusick
    Dkrusick Member Posts: 6
    edited November 2019

    Thank you for sharing . Hope it gets better and you can stay on it. Please keep me updated.

  • FNPMom
    FNPMom Member Posts: 43
    edited November 2019

    hello dkrusick, I had my 1st infusion 3 weeks ago and my liver enzymes went up - I also have joint pains to my fingers that come and go thatwasn’t there during neoadjuvant chemo - talk to ur MO - the kadcyla dose can be lowered from 3.6 to 3 to 2.4 mg/kg body weight - dose lowering is specified for certain side effects, it wouldn’t hurt to ask if he/she thinks it may abate your specific side effect(s) and enable you to stay on Kadcyla

  • Dkrusick
    Dkrusick Member Posts: 6
    edited December 2019

    Okay I will ask him. He did switch me to the two targeted therapy Herceptin and Perjeta.

  • SophieA
    SophieA Member Posts: 2
    edited December 2019

    Hello everyone. This is my first post. I completed chemo on September 3rd. I had lumpectomy surgeries on October 7th & November 11th. The second surgery pathology report came back with clean margins. I was in the process of being seen by Radiology to begin those treatments. I have just started on TDM-1 this week due to the residual disease. I had felt a lump about a week ago which I had assumed was due to the surgeries. I also had some redness on my breast. The doctors are concerned it’s a recurrence. I have had an ultra sound & will be having a biopsy. I’m quite shocked at the news. Has anyone else experienced this.