Enhertu: I am future tripping but want... - SHARE Metastatic ...

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Enhertu

Onedayatatime60 profile image
8 Replies

I am future tripping but want to still be prepared when the day comes. I am reading second line treatment for her2 +MBC is ENHERTU. Is that true? I live in Canada, I know it has been approved but information on provincial insurance coverage is hard to determine

I think you stay on it indefinitely / until it stops working?

Do you lose hair and is hair loss than for years?

I hate when people say- its only hair - I know that but the thought of it wearing a wig for years is distressing

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Onedayatatime60 profile image
Onedayatatime60
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8 Replies
Yumibelle profile image
Yumibelle

I hear you on the hair thing, that is a huge source of distress too. I lost all of my long past shoulder length hair in 2018 when on chemo. It took TWO years before it grew back to a length that I felt comfortable and feminine with. I absolutely HATED the baldy, buzz cut “old lesbian rocker” stage and I hated the in between short hair look as well. Short hair does NOT suit me and though I liked my wig, I hated HAVING to wear one to look normal. My hair thinned out loads on just Faslodex. It’s long but wispy. Now I am on Kisquali/ exomestane, no visible hair differences yet but I can SEE it’s thinning when I brush it as LOSDS of hair stays on my brush. Am off Kisquali for 15 days as having major abdo pain & onc wants to make sure it’s the Kisquali causing that. But the oestrogen blockers DO make your hair thinner. I have had trouble adjusting to each change in my body image. I fought to lose weight and not to put any back on and now have a BMI of 18,5. So at least I don’t have the distress of feeling FAT along with the old lady hair thing going on! I am sorry, I realise I am ranting a bit, but just wanted to say that you aren’t the only one who gets distressed over the hair loss/thinning aspect. Some ladies don’t seem to mind that, or are maybe just better at taking it in their stride! I am not, alas, one of those, and neither are you, and that’s okay, how we feel about our hair IS.VALID! I don’t know about Ehertu though. I wish you all the best. Virtual hugs sent

Onedayatatime60 profile image
Onedayatatime60 in reply to Yumibelle

It absolutely is valid.It is a side effect and should be treated like any other side effect.

Andersl profile image
Andersl

I'm totally with you... hair is hair and when I lose it, it bothers me. There's nothing wrong with that view. I can't answer questions about whether you can get it in Canada or not and in what circumstances.

I can tell you that initially I had a lot of hair loss ... it started about cycle 2. I also had other side effects (nausea/not eating) so they cut my dose by halve.

So after C2 I had my shoulder length hair cut short because it was falling out every time I brushed it. I went for a pixie cut.... very short. I didn't like it and couldn't wait till it grew again.

Since having it cut/going to halve dose my hair has been re growing.

Can I bring your attention to the work done in the States about starting anti cancer drugs on an effective dose the patient can tolerate. Sorry but my memory is not what it was. This is the work that Anne Lowe(? Spelling) started.

Could someone please provide more info on her work?

HelenWi profile image
HelenWi

Just wondering why you need a trial when both of these drugs are considered standard of care.

I think both of these drugs are supposed to be very effective. I would consider getting a second opinion from a cancer center such as Dana Farber that has access to a lot of research to get input on the optimal order for these two drugs,

Best wishes to you!

kokopelli2017 profile image
kokopelli2017 in reply to HelenWi

hi. her post mentions that she lives in Canada.

Onedayatatime60 profile image
Onedayatatime60 in reply to kokopelli2017

Yes. Would not be going to USA for treatment. I should add I am very happy with treatment here in Toronto area. The only cost to me in four years is parking, so very fortunate in that respect

Figletf profile image
Figletf

I will be getting dose 3 of Enhertu next week.I have lost a great deal of my hair.My brush is still full each day.The hair breaks rather than coming out at the root.This is my second time of losing my hair.I went thru this with Taxol infusions in 2019.

I have a wig but it is very hot to wear in Florida😣

I think I prefer the cute Newsboy chemo caps with scarves.

All MBC treatments are awful but at least I am still alive 😎

Hang in there and pray that what you are given works for you❤️

SoulJourney profile image
SoulJourney

Hi from Winnipeg!

On my 6th cycle of Enhertu for Her2-low. It is going through Canada Life work insurance with hubby, not part of MB pharmacare.

Ask your oncologist because your tumour type will matter. If it isn’t approved ask why not and what can be done. I have made great strides in knowing how and when to rock the boat a little.

I too prepare 1-2 drug lines ahead. I fought hard for Ibrance before it was approved here in Manitoba and got it!

Go get it if you want to try it!

Hugs

Tammie

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