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Old 09-24-2022, 07:32 AM   #21
Donna H
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Join Date: May 2014
Posts: 307
Re: Enhertu

I have bone mets and am on Enhertu - just had 11th treatment. Bone mets (left femur, spine and pelvis) are either stable or slightly reduced according to last scan. I have next scans on Oct 17th.

My oncologist lowered my dose yesterday in hopes to alleviate/reduce side effects. My side effects have gotten worse. And I am trying a 4 week cycle rather 3 week. All this can revert back if scans show progression.

From what Ive read, Enhertu looks to be very effective but there is minimal long term data.
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Old 09-25-2022, 07:34 AM   #22
Nguyen
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Join Date: Nov 2005
Posts: 531
Re: Enhertu

Such a coincident, my wife has bone met in the exact same 3 areas as DonnaH, she also has lung mets. Next week would be our 5 months on Enhertu, tumor marker has been coming down fast the first 3 months, but slowing downward trend now. At best scans show stable bone (bone environment protects tumor), perhaps slight reduction in lung nodules.

The two supporting drugs, Palonosetron and Dexamethasone, cause additional problems. Dexamethasone causes jittery/hyper then insomnia the first 2-3 days after administration, followed by tiredness from lack of sleep. Palonosetron causes severe dizziness and tiredness. The two combines to cause her not able to function essentially for 2/3 of the days in between 3-week cycle.

The main purpose of Dexamethasone (a steroid) is to prevent allergic reaction and nausea. If you have no reaction after the first 2-3 cycles, discuss with your oncologist of reducing dexamethasone then eliminate it, if no problem with reduction. We started reduction Dexamethasone by half then eliminate it. Palonosetron main purpose is to prevent nausea, we use the same reduction method and eliminate it too. She is doing much better now without the two supporting drugs. Incidentally she is also on Zarzio, an immune system booster due to perpetually low count from all the years of continuous treatment.

Nguyen
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Old 12-08-2022, 09:11 PM   #23
Nguyen
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Join Date: Nov 2005
Posts: 531
Re: Enhertu

Hello,

While under Enhertu regimen, does anyone get the chill in the middle of the night or nap that cause one to wake up? This happens almost everyday.

Thanks.
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Old 02-17-2023, 09:12 AM   #24
Donna H
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Join Date: May 2014
Posts: 307
Re: Enhertu

I dont have chills as such but I am cold most of the time. I layer up like Im living in at the north pole.

I have been on Enhertu for over a year now. Crazy it has been so long. Last scans showed my tumors are stable so the plan is to stay on Enhertu as long as I remain stable and side effects are managable.

Is anyone else on Enhertu and if so how is it going?
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Old 02-22-2023, 12:08 PM   #25
Nguyen
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Join Date: Nov 2005
Posts: 531
Re: Enhertu

My wife has been on Enhertu since May/2022. During the first 7 months her CA27.29 dropped very fast, but the last 3 Ca27.29 has been rising, we'll have scans next month to check status. Her Ca27.29 has been correlated 100% with imaging for the last 20+ years.

She has been on continuous treatment with trastuzumab (herceptin) or trastuzumab based (T-dm1, T-DxD, etc) regimens all these years. Her left ventricle ejection fraction (LVEF) and left ventricular global longitudinal strain (LV-GLS) had been in normal range. But they have just dropped out of normal range with this month echo cardiogram. Heart damage is a risk factor from Herceptin based regimens, since there are her2 receptors in the heart's cells and elsewhere. With the well known by-standers effect of T-Dxd (Enhertu), it affects the heart more. I hope you have echo cardiogram regularly.

Nguyen
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Old 02-22-2023, 02:19 PM   #26
Donna H
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Join Date: May 2014
Posts: 307
Re: Enhertu

I get echos every 3 months, and I also get bone and ct scans every 3 months. So far the echos have always been good. The other scans have been stable since I started on Enhertu.
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Old 02-22-2023, 04:21 PM   #27
Nguyen
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Join Date: Nov 2005
Posts: 531
Re: Enhertu

Donna,

Did you read your CT and bone scan reports? If yes, for the CT scan report did it specify the size of each tumor spot and indicate the size increase/decrease? With bone scan report, how did it conclude progression or not? It is much harder to determine progression with bone scan unless the change is very large or new location.
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