Enhertu

[elle3054]

Hair loss and Enhertu

Any thoughts?

[Claireperth]

these drugs are sometimes designed to attack fast growing cells of which hair cells are. Hopefully it will settle down🌸

[elle3054 in reply to Claireperth]

Thank you I was afraid of that!

[kearnan]

I had ONE, just ONE infusion and I lost every piece of hair on my head (besides the whole drama thing which I posted under a new post called Enhertu. I was told MINIMAL hair loss. Every piece of my hair came out in bunches. But then again, I had such a scary reaction to it. Five years, never chemo, then one INFUSION (I did not even know it was real chemo).

The hospital called my home several times after my infusion (I live alone and both my onco and palliative care doctor knew about that) and the cops wound up breaking down my door (and the police also brought EMTs since it was a hospital calling). I was found in my bathroom talking gibberish, the report said blunt force trauma. I was hallucinating and was terrified. All I remember was sitting in the chair for my first infusion, next thing I was in the hospital (had been there for three days). I have no memory of them breaking down my door OR taking me to the hospital. The hallucinations were terrifying.

So if that is your only experience is hair loss, than that is great for you. I could not walk without falling down. I had to use a walker. When you go through what I went through with that medicine that FDA had fast forwarded just in August 2022 for women with stage iv, you would be thankful. I had to have them come two more times. I could not even remember how to spell my name. It was horrific for me so it is good that that is all you are experiencing or worrying about. This was my first and obviously ONLY time with that.

I do not think it was the medicine. I think my onco had not enough enough research of factoring in all the drugs I was on at the time, not just ones for the cancer.

[Dawnm203 in reply to kearnan]

i am so very sorry, i start it Next Thursday and i am nervous about it

[elle3054]

OMG Im so sorry this happened to you,

How are you doing now? I had bad reaction to piqray nothing like you had but lost 37 lbs and had constant diarrhea then I had ibrance and taxol my hair was falling out with that and ice packs when I took treatment and xeloda and will start enhertu Thursday I pray we all get better!

Love

Ellie

[Dawnm203 in reply to elle3054]

i pray we get better too

[Ursula_I]

Hi Ellie

I have been on Enhertu nearly six weeks (due my third round on Friday), no hair loss as yet. The main side effect has been fatigue.

All best

Lucy

[Bettybuckets in reply to Ursula_I]

bummer about the fatigue.. I’m on my first month with cape and doing really well so hoping this lasts. But today I saw my NZ Oncologists while visiting and she gave me the Destiny trial and thinks it would be for me down the road a bit. Data looks good but that fatigue will be a bummer. Everyone is wanting to here from the few pts on it like you so do keep us abreast… Pun intended!

[Ursula_I in reply to Bettybuckets]

yes, I am hoping for a good result as this is now my third line of treatment in only 16 months... I'll have my first scan in a few weeks to check on the Enhertu 🤞

[Hopeful4Cure in reply to Ursula_I]

Hi Ursula, How is your treatment on enhertu going? All of us that are on it now would love an update. Hope it is treating you well and helping. Blessings

[Ursula_I in reply to Hopeful4Cure]

hello Hopeful

I'm still on Enhertu - it's been seven months. Scans have shown a good result on the brain lesions and nearly all the other places in my body are "stable". Side effects just about ok but fatigue an issue. My hair is still just about in place, looking rather raggedy!

However the pleural effusion (fluid around the lung) suddenly got worse and I had to go into hospital two weeks ago. Also I had Covid. My blood oxygen sats were down and at one point I was on 8 litres of oxygen (per minute), they were really worried that I might get suddenly worse because of the Covid, talking about intensive care etc it really freaked me out.

They put in a chest drain and took off nearly 1.5 litres from one lung, that's been sent to pathology to see if it was Covid or cancer. If there are a lot of cancer cells that will be classed as progression so that might be the end of Enhertu for me.

It's given me seven months but I don't think there are many possible lines of treatment left for me 😢. So I am crossing my fingers that the pleural effusion was down to Covid. I get the results on 2 August. In the meantime I did have my Enhertu infusion last Fri.

I hope everyone is doing well.

[Hopeful4Cure in reply to Ursula_I]

Thanks a mil Ursula for your kind response. I would think it has to do with covid. Please let us know. How about your tumor markers? After so many months, surely they have come down and you have stated that the scans are stable. That is a good thing. I totally understand how you feel about wondering what is next. Not sure about your total dx, but for me, for an example, I have gone through meds because I am her2 low. I have just had my 2nd infusion and still no real issues, just really tired. Hang in there and keep your chin up and be extra careful being aroung people. I still wear a mask and when I fly Ibuy the first row seat just after premium to stay away from the majority of people. Domestically, I still wear a mask too and sanitize my hands often and i just do not care what people think. We do not know where they have been and whom they have been around. Try to get eucalyptus essential oil and use a carrier like cbd or even olive oil (extra virgen) and rub it on your upper chest and upper sides (lung area) it will assist in repairing any damage and keep you from getting sick again. Covid and other crap are still out there. Glad to hear you have been able to keep your hair too. Keep in touch and stay strong. Hugs

[Dawnm203 in reply to Ursula_I]

i hope the fatigue gets better

[DorothyR]

I have been on Enhertu for 8 cycles. I have not lost hair. I was bald due to wbrt and my hair is growing back really fast now.

[LDR1 in reply to DorothyR]

that is great, DorothyR! How are you feeling overall on Enhertu, while enjoying the return of your hair?

[DorothyR]

Hi LDR1, overall I feel pretty good. I have a little fatigue for about a week after infusion. It's not so bad that I can't function. I just take it easy and rest when needed.

[elle3054]

Hi all, Thanks to you all for the support had my first treatment Enhertu And got sick half way through had to stop and finally was able to finish treatment Anyone has any mood changes or cognitive changes?

[Supermary]

I’ve been on ENHERTU since June 2021

I cold cap and my hair grows but it’s a slow journey with the hair

I get tired which stinks but I still work

By bowel issues continue to be a pain but I try to counteract with senna and colace

Regarding mood yes I have noticed mood

Changes the week prior

And on occasion the week of treatment not sure why

For all those having infusion trouble ask to ensure they dose you correctly and what’s been helping me just lately is a saline hydration drip right before the chemo goes in plus a follow up with the remainder in the bag right after the chemo is done

I think after being in non stop treatment for stage 4 since June 2020 my biggest issue is realizing this is now my life and honestly it sucks

Tired of medications, drips, doctors, worrying about hair and scans and all the rest

I keep going for my kids but honestly there are days I feel my mojo is just not so strong

Best of luck

Margaret

[Dawnm203 in reply to Supermary]

omg i am right there with you

[elle3054]

THank you Margaret so much! I feel the same way if it wasn't for my daughter I would just let it go really tired I do not have a cold cap but i take ice packs and yes it does help and I take biotin God Please feel better

Ellie