u/Flaky_Amphibian_5597

Just seeing what other Enhertu folk are experiencing.

My hair had a major shed after No. 2 and I cropped it very very short (I had SO much hair that having a major shed was just too depressing).
It was very thin in one area but I had decent all over coverage.
I think my bone marrow mets and low red cell count caused more shedding (more like postpartum shedding) but it’s been slowly, consistently filling in with less/normal shedding. It’s my natural colour (less grays!) but unsure of texture yet.

I had a break for surgery (17 days from when my last infusion was due, but have had No. 6 today), I’m hoping I don’t have a shed due to the break.

How is your hair going?

I had my ovaries and fallopian tubes out over a month ago. I have been on ovarian suppression on and off for 7 years (since my initial Stage III diagnosis). I haven’t had any changes in myself bar a little bit of wrist/joint pain in one hand as I’m falling asleep. A friend said it’s likely that I’m curling my hands and wrists as I sleep so I’ve kept my hand and wrist straight (this seemed to work).
I initially took Arimidex as an AI after Stage III treatment and got trigger finger and de quervain's tenosynovitis, so changed to Tamoxifen. I think I’m anxious because of that experience.

Any hints or tips for this menopause side effect?

(My cancer decided, in desperation I like to believe, to hide in the pharmaceutical sanctuary site of my ovaries (where chemo has difficulty reaching due to blood structures, tumour heterogeneity etc) so they had to go and on with Enhertu I go!)

I just had my “bulky” looking ovaries removed as they came up on my pet/ct. 4 rounds of Enhertu had shrunk my bone and bone marrow disease considerably but my ovaries decided to ruin the good news. My tumour markers are dropping too.
Even after ultrasounds, they could say whether the ovary growth was benign or malignant so surgery was the best course of action.
Ovaries are a pharmaceutical sanctuary site where chemo finds it hard to penetrate due to blood structures etc. My cancer is estrogen hungry so having a go in the ovaries makes sense.
If breast cancer cells are found, they can be sequenced and we can get incredible insights into my cancer. As I’ve only had bone and bone marrow mets, we’ve only been able to go by a limited bone marrow biopsy, circulating tumour dna but no tissue samples that provide the best comprehensive genomic sequencing.
So if the bulky ovaries are benign, I’m not getting anymore information about my cancer.
If cancer cells are found, we’ve removed the sanctuary site (so Enhertu can track down micro mets), removed my ovaries and the estrogen (even residual) in that area and I get information for future treatment & clinical trials.

Hopefully the only time I’m hoping cancer cells are found.

Hello mbc folk,

I may have to have surgery to remove my ovaries and a single lesion on my peritoneum. I had surgery with Stage IIIa (unilateral mastectomy and Diep flap recon) but nothing outside of those.

Have you had surgery since MBC diagnosis?
What was it for?
Was your treatment paused and restarted? Or was treatment different after surgery?

My scan after 4 cycles of Enhertu showed an amazing result for my bones and bone marrow.

The tumours in my ovaries - that they believe are Krunkenberg tumours - have progressed with a lesion on my peritoneal. These Krunkenberg tumours are notoriously resistant to chemotherapy.

No other new lesions.

I have to wait until Monday to see if surgery is an option and it maybe Enhertu is ceased.

I’m angry - I’ve asked to have my ovaries out numerous times. I’m terrified this progression is so aggressive my life will change again. I’m worried about not having many treatment options.

I can’t even celebrate the incredible result in my bones and bone marrow.

Hey Enhertu mates,

I’m coming up on cycle 4 and have been lucky enough to be navigating very mild side effects.
Interested in hearing experiences or advice on the following;

Hair - I had a major shed but it’s stopped and my hair is filling in. I’ve had areas that are sparser than others but it’s definitely growing. I’m expecting sheds in a few months due to anemia (I have bone marrow mets, my red blood cells crash and are the last blood measure to come up. I had this with Abemaciclib & had what was like post partum loss and then incredibly thick, curly hair)
Have you seen continued growth and what was the texture like?

Constipation - I have Zoloft as a premed then low dose olanzapine days 1-6, then I find I’m struggling with bloated, constipated grossness. Any advice on when you’re taking constipation management during the cycle would be awesome.

We have amazing knowledge in this group.

Thanks for taking the time to read this :)

I live in an 8 apartment block, numbers on the doors. 4 on the ground, 4 on the first.
A real estate agent just tried to gain access to my apartment (ground floor), really trying the lock & then seemed genuinely surprised when I opened the door a bit pissed off.
He wanted number 6.
All 4 doors facing him.
That is a special kind of stupid.
No apology either.
Where do they find these people?!?!

My hair started shedding the day of my 2nd Enhertu. It’s at least all over my head equally but if it keeps up at this level, I will be bald by Enhertu no. 3.

What are people’s experiences with the great shed and regrowth?

I’ve not had significant nausea, fatigue or any toilet issues so far, this is the most distressing side effect and only because hair is everywhere. I’m going the shave tomorrow but am hoping the shed calms the f&$k down!

I just wanted to share my experience with my first Enhertu infusion so there’s different experiences being shared (feel free to add your own).

I was very nervous going into Enhertu as I have an imbedded fear of nausea from motion sickness as a child and all the other things that come with IV chemo.

I have Bipolar Disorder 1 so do not get steroids, just Zofran prior and then another med days 1-6.

First infusion was long, but had the most amazing nurse who was so calm and methodical. Felt great afterwards (meds plus the glucose drip). I took 5mg of the additional med and woke up partly sedated so we cut the dosage.
Days 1-6 really very low lingering nausea that went away once I got up and moved and ate.

I have most of my mets in my bones and bone marrow and had very low platelets and red cells going into treatment. My red cells crashed so I felt sick days 12-15 because of that and had to have a blood transfusion. If not for that I would have felt fine, I had no break through nausea days 7 onwards.

I was able to do Pilates and work with the anaemia my only challenge.

I had a review yesterday - my platelets have doubled since infusion and my white cells have held steady!

I’ll be continuing at 80% due to my bone marrow mets.

Other side effects;
Dry skin
Running nose
I got a weird skin rash of a few cyst like pimples that are apparently related to the targeted therapy - uncool.
Constipation days 7-8
I think I might be shedding slightly more - really a few hairs more and it maybe due to the anaemia plus chemo.
Hard to tell re fatigue due to anaemia.

One thing - I have a few chin hairs that I battle with often daily and they haven’t come back. All other hair still in place.

So way better than AC chemo. I might get slammed on my second and third rounds but this is tolerable.