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.

[13plus in reply to Andersl]

This is good to learn of your experience. I’m due to start within the week I believe

[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...

[Andersl in reply to TammyCross]

Thank you. I love in the UKThere is another drug I can try I just wondered what others had taken

[TammyCross in reply to Andersl]

Sorry, I was replying to Elle in NY

[13plus in reply to Elle713]

I live in NJ and commuted to Philly for 6 Months last year for a trial at Penn. I ended up having to visit more often than was planned for various reasons so it was a bit trying. I ended up failing on the trial but I was glad to go back to my regular hospital anyway, and not be travelling back and forth like that.

Trials are great for attentive care though. I think it depends how much support you have that needs consideration. If you find one, research questions to ask and ask as many as you can think of ! Including precisely what charges are covered by trial and what is covered by your own insurance (I wasn’t expecting so much to fall into the latter and ended up being quite a bit out of pocket as Tier 2 to go to Penn which I hadn’t realized until it was too late

[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.

[Flower1513 in reply to Shafight]

Do you take a full strength dose or has it been cut down? Thanks

[Andersl]

It was cut to half a few months after I started it in July last year