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Topic: Starting Nerlynx in May, 2019

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Apr 12, 2019 06:37PM

Positiveinohio wrote:

Hello all,

I have just completed my year of Herceptin treatment on April 3, 2019. I am scheduled to start Nerlynx in May, 2019. I would like to have a forum where others on Nerlynx or starting Nerlynx can discuss our symptoms and side effects. If anyone can give me some advice on what side effects besides diarrhea I can expect that would be awesome. I would also like some tips to reduce the side effects. Thanks so much!

Positiveinohio Dx 2/27/2018, ILC, Left, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (FISH) Chemotherapy 4/3/2018 Taxol (paclitaxel) Targeted Therapy 4/4/2018 Herceptin (trastuzumab) Radiation Therapy 7/23/2018 Whole-breast: Breast Hormonal Therapy
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Jan 13, 2020 04:47PM Beesy_The_Other_One wrote:

Oh, LeftFootForward, I forgot you were in Seattle, also! We haven't heard from you regarding Nerlynx--I'm hoping you were able to get into the trial. Please update us!

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 13, 2020 06:51PM leftfootforward wrote:

Betsy-

Sorry. I forget where I have posted. I did get into the trial in CA.

I travel every 3 weeks to see the team in San Francisco and to get my next bottle of Neratinib and to get one cycle of TDM1. I wasn’t down and back on Tuesday of last week ( 20 +hour day).

Combination of adjusting to meds and the travel are about king me in terms of fatigue but I’m plowing through it. I’m told my body will adjust.

I get scanned at the end of this cycle so CT in the 23rd, brain mri in the 27th. just believing both will be good and it’s all worth it.

Thank you for asking.

Dx 12/13/2010, IDC, 3cm, Stage IIIA, Grade 2, 1/16 nodes, ER-/PR-, HER2+ Dx 12/4/2012, IDC, Stage IV, 0/0 nodes, ER-/PR-, HER2+
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Jan 16, 2020 03:28PM hapa wrote:

I'm about five days back into taking Nerlynx and oh my god this is what everyone was talking about. It started yesterday early morning and just got worse all day long. I must have made 10 trips to the bathroom, maybe more? I did not know it was possible to crap out meals you haven't even eaten yet! On the upside, I did hit the waffle house for lunch yesterday. Two eggs over easy, biscuit with gravy, hash browns scattered smothered and diced. And a pecan waffle. I ate it all. Not my best idea ever, I probably should have opted for six bananas instead. Things seem a little calmer now, but it was tolerable during the day yesterday, and I've been eating small amounts, so after dinner I'll have a better idea if this was a one-day thing or if I need to contact my pharmacist. I came back in with six pills a day off the bat and maybe that wasn't the best idea. Still took six more today though. We shall see. Hope everybody is doing well.

leftfoot - I'm glad to hear you got into the trial! I wish this could have been easier for you.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Jan 17, 2020 11:54AM hapa wrote:

That was a rough two days but everything seems better now. No problems since dinner last night. Still doing the six pills. I have six months left.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Jan 17, 2020 02:57PM Beesy_The_Other_One wrote:

hapa, this is great news! I read your post late yesterday and didn't get to respond until now, but what I wanted to say in response is this: if you were going down, you might as well have done it in a blaze of glory, eating at the Waffle House! I wouldn't have had the chutzpah to do such a thing!

As for me, I'm happily eating salads and anything else I want, and things are very "normal." What a turnaround from the first 17 weeks!

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 24, 2020 09:53PM PJ_Seattle wrote:

haha - I am sorry you had a bad couple of days, glad you are better. And, I applaud your trip to the waffle house! That made me smile.

Beesy - I do separate out my meds, and when I switched to taking my Nerlynx at night, I transitioned all my other meds to the morning. The cholestipol still seems to be working, but still eat things occasionally that cause problems. I made stir fry this evening, with mostly vegetables, so took an Imodium just in case! Next, a salad!

Fortunately, the snow wasn't as bad in the city as they were warning! It's so hilly here, it makes it hard to get around.

Leftfoot - Congrats on getting into the trial. The travel sounds hard, I hope it goes easy for you!

Dx 7/2017, IDC, Left, 6cm+, Stage IIIA, 3/16 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Surgery Reconstruction (left); Reconstruction (right) Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary Targeted Therapy Nerlynx Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy AC + T (Taxol)
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Jan 24, 2020 11:03PM hapa wrote:

Beesy - I'm glad you're doing better with your reset.

PJ - I do not envy you in the snow up there. I told my husband we are never moving north of the Mason-Dixon line again. I just can't handle the snow. Phoenix gets hot as Hades during the summer, but you don't have to shovel sunshine.

No more issues since the D cleared up, I'm glad to report. Also, it looks like my Nerlynx is costing my insurance company $14k/month still. I don't know what the $4500 charge was. But I checked my insurance today, and my entire deductible and out of pocket max seems to have been paid, minus $20, by the Nerlynx patient assistance program.

In other news, two people have told me that I have more color in my face lately. So maybe that break did do me some good.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx

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