Treatment toxicity on Enhertu

[Andersl]

Has anyone been diagnosed with treatment toxicity whilst on Enhertu?If so, how was it managed?

And we're you able to go onto another drug?

[Chamisa]

I am on a pause from Enhertu. It has caused pneumonitis. My oxygen levels have dropped (I get out of breath a lot) and I cough a lot, except when I’m on high enough steroids to tamp down the inflammation. I’m currently on steroids and am awaiting an appointment with a pulmonologist before we settle on a plan of action. I’ve been unhappy with the slowness of getting this figured out, and I’m also a patient at MD Anderson, so I’ve reached out to my MDA care team for them to take over the pneumonitis management plan.

[Andersl in reply to Chamisa]

Thank you so much for your reply.This really is a harsh treatment but effective.

After my first few doses I had to have the dose halved to be able to continue. I had about another 6 cycles before feeling rough again. That time I had a 4 month break. Surprisingly though I've had no recurrence either in my brain or body (liver and lungs).

Last month I switched to every 4 weeks instead of 3 as I didn't feel I had much quality of life.... fatigue, no energy to go out.

I've got to the average progression free survival point (13 months) without progressing. If I had a choice I'd go for treatment every 2 months or not at all until progression then switch drugs (tunicinab. - possibly misspelt)

Unfortunately we don't get what we'd prefer...

[Chamisa in reply to Andersl]

Yes, harsh is the word. But effective. It worked very well on all my mets (including brain). But the lung issue happened after infusion #4.

MDA got me in with pulmonary in a couple of weeks (the Labor Day holiday is a wrench in the works) so I’m happy. They’re doing a thorough assessment to make sure it’s pneumonitis. They’re efficient! More than I can say about my local oncologists. Anyway I’m glad to get this attended to because it doesn’t seem to be resolving.

[Elle713 in reply to Chamisa]

Hi

Wondering if you live in Texas and have two teams of oncologists. Been considering getting second opinion but I’m in NY and don’t know what it means if I look for clinical trials, etc out if state. Would be commuting?

[Andersl in reply to Elle713]

Sorry, i live in the UK so can't comment on US practices as they're so very different.

[Chamisa in reply to Elle713]

Yes I live in Texas and have one care team at UTSW in Dallas and another at MD Anderson in Houston. I haven’t been part of a clinical trial yet but at my last MDA visit I met a gentleman from upstate New York who traveled once a month to MDA (for a year; it was his last clinical trial visit).

I’m sure each trial is different, with some things possibly done at your local oncologist’s or with different check in schedules. I just know that many people make the logistics work.

[BorisCarloff in reply to Elle713]

Hi Elle Did u try MSK? I love them so! So attentive, I don’t feel like a number but well cared for and communication is terrific

[Elle713 in reply to BorisCarloff]

Yes. I have many of my oncologist specialists at MSK. The care is the best. Thank you

[TammyCross in reply to Elle713]

MSK can advise you on clinical trials. They have a lot going on. They might know of others in New York...but it usually does involve travel unless your hospital is one of the sites. I would look at Dana Farber...

[Shafight]

I just received my 10th Enhertu transfusion. I had my best PET scan in 3 years after Enhertu. I had no progression and some cancer was gone. I always have a few days of fatigue and I continue to have diarrhea but all else is well on enhertu.

[Andersl in reply to Shafight]

An example of how everyone's body can react differently:)I hope you continue for many months without problems.