Topic: Anyone starting brand new drug, Enhertu?

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jan 1, 2020 12:51PM - edited Jan 1, 2020 12:51PM by jnh

Posted on: Jan 1, 2020 12:51PM - edited Jan 1, 2020 12:51PM by jnh

jnh wrote:

I have had growth of tumors while on current treatment. My onc and I have decided to try new treatment, Enhertu (FDA approved 12/20/19)! Wondering if anyone else out there is trying or was in trial?


Julie Dx 10/24/2002, IDC, 2cm, Stage IIB, 3/14 nodes, ER-/PR-, HER2- Surgery 11/13/2002 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 12/21/2002 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 7/7/2011, IDC, 3cm, Stage IV, metastasized to bone/liver/lungs, mets Chemotherapy 7/15/2011 Xeloda (capecitabine) Hormonal Therapy 6/6/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/6/2013 Aromasin (exemestane) Targeted Therapy 6/6/2013 Afinitor (everolimus) Hormonal Therapy 4/28/2015 Femara (letrozole) Targeted Therapy 4/29/2015 Ibrance (palbociclib) Targeted Therapy 11/9/2015 Kadcyla (T-DM1, ado-trastuzumab) Chemotherapy 5/31/2019 Xeloda (capecitabine) Hormonal Therapy 5/31/2019 Arimidex (anastrozole) Targeted Therapy 5/31/2019 Tykerb (lapatinib) Targeted Therapy 1/28/2020 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Nov 23, 2022 02:14PM illimae wrote:

Croton, as the mods did, I also encourage you to join us by phone. I also agree that treatments often harsh but I’ll say that Enhertu is really new med tech and I’m super impressed by the Trojan horse way it works. After 6 years of stage IV with stable scans, my latest ones were the best so far.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ Radiation Therapy 10/20/2017 External Local Metastases 10/20/2017 Brain Radiation Therapy 4/18/2018 External Local Metastases 4/18/2018 Brain Radiation Therapy 5/23/2019 External Local Metastases 5/23/2019 Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External Local Metastases 2/17/2020 Brain Radiation Therapy 7/20/2020 External Local Metastases 7/20/2020 Radiation therapy: Bone Radiation Therapy 12/4/2020 External Local Metastases 12/4/2020 Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 23, 2022 06:34PM nkb wrote:

Croton- hi. it is really scary and hard to start a new medicine and wonder if you will manage side effects and if it will even work. One of the reasons that MOs are so excited about this drug is that it has a high level of working even in "heavily pre-treated " patients- for Her2 low the numbers are small, but, from the meds you have been on, I assume that you are her 2 +. I am Her 2 low and my tumor markers are coming down, I have not had a PET yet- will in the next few weeks- I just had infusion #4.

I have been using cold caps (Paxman) because many people lose all their hair- especially if they have had previous chemo where they lost their hair- many people do not lose their hair (not a lot of data) and it seems many people shed a lot for 2-3 cycles and then it starts to grow back. I thought losing my hair the first time was very traumatic and I didn't like wigs much- It took a long time to grow back in. I Chose to cold cap- it adds time to your infusion day, is uncomfortable for the first 15 minutes- but, I have only shed about 30% of my hair, no bald spots, not wearing a wig- more hats because I am cold- it's winter- and having small little areas of regrowth. cold capping helps regrowth by protecting the follicles. the funny thing is that most people on Enhertu do not lose their eyelashes or eyebrows! some do.

There is a Facebook group for enhertu- but, many people who post on it are having a hard time with this drug. there is a Paxman site also on Facebook with lots of useful info. some people get reimbursed by their insurance for cold capping.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+, HER2- Surgery 2/3/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary; Lymph node removal (Right): Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 2/27/2012 AC + T (Taxol) Radiation Therapy 9/10/2012 Hormonal Therapy 10/20/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 5/31/2017 Faslodex (fulvestrant) Targeted Therapy 5/31/2017 Ibrance (palbociclib) Targeted Therapy 3/12/2019 Afinitor (everolimus) Hormonal Therapy 3/12/2019 Aromasin (exemestane) Chemotherapy 3/9/2020 Xeloda (capecitabine) Targeted Therapy 9/13/2022 Enhertu (fam-trastuzumab deruxtecan-nxki)
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Nov 24, 2022 05:59AM croton wrote:

Thank you

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Nov 24, 2022 07:52AM ninetwelve wrote:

Just had infusion #4. This time we lowered the dose, and I traded the ondansetron (Zofran) for prochlorper (Compazine). Doing better this time with nausea. Some annoying headaches, but not bad enough to bother with painkillers. Still quite a bit of fatigue, but part of that could be low energy from the change in daylight. Seasonal affective disorder has always been with me.

Haven't really lost my hair with this treatment, but it looks like my new hairline is quite a bit higher than it used to be, before the Taxol. Hair did grow back, but not all of it at the top front. Don't know how it's working yet, but my markers were trending down. I'll have a scan in January to see if this is doing anything for the new growths in my spine, rib, liver and lungs.

12/15/20 - Progression to liver. Tx changed to Xeloda. Dx 9/12/2014, IDC, 4cm, Stage IV, Grade 2, mets, ER+/PR+, HER2- Hormonal Therapy 9/15/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 10/1/2014 Dx 7/2016, IDC, Stage IV, metastasized to bone/lungs Hormonal Therapy 8/16/2016 Faslodex (fulvestrant), Zoladex (goserelin) Targeted Therapy 8/16/2016 Ibrance (palbociclib) Chemotherapy
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Nov 25, 2022 07:24AM goldie0827 wrote:

Croton, most definitely Ilimae has had a great response to this drug. I only have 3 under my belt. My hair started to fall out after my 3rd treatment. Not as bad as when I did the big chemo's in the beginning (2008). To my understanding, it will just thin and not go completely bald. I say give it a try, you can always quit. I know nausea and vomiting are common with this drug, I have been fortunate enough to not have any at all. My MO changes my treatment when my TM's go up, however, that doesn't seem to make a difference. I change and they still go up. I too have thought of quitting and let nature takes it course. My mets are bone only, I have no pain whatsoever and have not had to have any radiation since stage IV.

AKA - Sugar Lusty Heat! Hair pictures on my profile. DON'T LOOK DOWN ON ANYBODY, UNLESS YOU'RE PICKING THEM UP! Dx 3/27/2008, DCIS, Right, 5cm, Stage IIB, Grade 2, 2/2 nodes, ER+/PR+, HER2- Dx 7/2014, ILC, Right, Stage IV, 2/2 nodes, ER+, HER2- Chemotherapy AC + T (Taxol) Radiation Therapy Breast, Lymph nodes Surgery Lumpectomy; Lymph node removal Hormonal Therapy Arimidex (anastrozole)

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