Lynparza was a bust so Enhertu is next

[Iwasborntodothis]

Lynparza was super easy - I've had a nice "vacation" from IV chemo for 2 months and I feel like I'm not really on any meds except for a little nausea now and then. We had to fight my insurance pretty hard to get me this med because I do not have the BRACA mutation. At appointment yesterday labs showed all the "bad" numbers doubling - liver counts way up and CA15 back to 1700. Super disappointing because I feel good/normal and I've got fuzzy duck hair coming in for the first time in almost 2 years.

So, I will be joining the Enhertu club the first or second week of September. I will read your posts but any additional advice is appreciated. This will be my 8th? line of treatment and will be starting on my 5 year diagnosis "anniversary. Trying to stay positive today and just be grateful, allowing myself a little time to wallow in self pity then I'll move on.

[Adele_Julia]

Take heart !! Enhertu was super easy for me. 10.5 months before mild progression in liver. I didn’t Lose any hair at all. Minor constipation and that’s it. Join the Enhertu Facebook group. Tremendous support. Are HER2 positive or low? Enhertu works best for HER2 positive but many her2 low patients like me benefited . I also have the pik3 mutation. Wish I were back in Enhertu !!

[Iwasborntodothis in reply to Adele_Julia]

Thank you! How are you doing?

[Adele_Julia in reply to Iwasborntodothis]

Doing ok. Enhertu failed out not because of it not working but because my liver Mets have the pik3 mutation. I’m doing g a few Roy ds of low dose taxol to kick the liver Mets back. The. It’s Truqap or a very confidential opportunity I’m exploring at the moment involving precision oncology. Basically coming up with a specific drug combination cocktail as it were, that blocks all pathways .

[Iwasborntodothis in reply to Adele_Julia]

Wow...I am glad you are doing this. We have to fight and research a lot on our own. I'm glad I fought to try the Lynparza but I know my data will help others. I also argued with my doc yesterday because I read that it takes 2 full months for results. So, I am staying on it until September 9th and getting an intermediate lab draw just to make sure before first Enhertu infusion. INf act I need to log off and go get that lab appointment set up now. Have a great day.

[Adele_Julia in reply to Iwasborntodothis]

Lynparza (olaparib) also came up for me. One of my skin Mets has an Brc1 of unknown significance … not taking it currently

[13plus in reply to Adele_Julia]

So you were able to get a liver biopsy to determine different genetics in that cancer? I'm curious if it was done early in your dx or did they originally assume one type of genetic makeup for all locations? I've got liver mets and wondered if it might be different to the original bone mets but they were too small to biopsy. Of course that last fact might have changed by now with my current climbing TM's again!

And the confidential opportunity that has come to you (without giving the details away) Did that come via your doc/hospital, or was that something you chanced upon by other means?

I'll be changing drugs again soon I'm sure. And I have a new-ish doctor (very experienced but new to my hospital) and I have not had enough time with her yet to know how much she considers other options outside the box 🤓

[Adele_Julia in reply to 13plus]

Didn’t have a liver biopsy. I had 3 types of liquid biopsies and a pathology biopsy on a skin met that appeared. My liver Mets have the Pik3ca mutation whereas my skin Mets are HER2 low and took well to Enhertu. I’m in the early stages of participating in a customized trial designed for my specific cancer genetics. It will use a variety of FDA and clinical trial drugs to come up with a specific cocktail.

Standard of Care in most places follow an approved use. So you basically burn thru treatment options until you’re out of options for your cancer type. The sad thing is each drug is sequential whereas most need a combination. I can’t share more at this time.

[13plus in reply to Adele_Julia]

Thank you for your insights. I think the trial you're considering is logical in concept and a good option to explore! I am confused how they could determine what your liver mets genetics are without a biopsy, oh, unless the skin mets was the only other body system affected by cancer?

[Adele_Julia in reply to 13plus]

Bingo ! Precisely. I have skin Mets and liver Mets with a few healed bone Mets

[TammyCross in reply to Adele_Julia]

Precision oncology sounds like the way to go, the future, but more expensive, perhaps, to do the testing to be precise in treatment. Sorry you have to be discreet about it.

if you go that route, perhaps you can just describe the process for us.

[Iwasborntodothis in reply to Adele_Julia]

Also, I am not on Facebook and am not interested in re-joining for numerous reasons so I'll have to skip that info.

[Adele_Julia in reply to Iwasborntodothis]

I also don’t do Facebook. I have a profile to join confidential breast cancer groups. They are awesome and confidential so no one sees your posts. Very informative to just peruse. There is a specific Enhertu group with over 30k members

[Adele_Julia in reply to Iwasborntodothis]

No worries . I don’t do Facebook for probably the same reasons. Just use it for my groups.

[CTGirl1962]

We will ALL be here for you!!! Have your pity party and then…..FIGHT!!! Enhertu has turned out to be ok. At first I thought it was the DEVIL because my first infusion was so awful, but I just had my 3rd and I’m doing so much better!! They lowered my dose to 80% and it’s perfect.

Lots of luck and remember…WE ARE HERE FOR YOU!!! 🩷🩷🩷🩵💚🩷

[Flower1513 in reply to CTGirl1962]

How do you know the dosage for 80% ? This may be a hard question and you may have no clue. Mom starts Thursday and they said their doing a reduced dose but it’s by her weight. So I’m very confused. She had radiation to spine area which caused some irritation of esophagus which they said was common. But I don’t want her first round to be hard when dealing with this already. They have been made aware. Thanks ❤️

[CTGirl1962 in reply to Flower1513]

They calculate the dose based on weight and, for me, they reduced it by 20%. It’s in the package insert how they calculate.

Hope this helps!!

🙏🏻

Jody

[Flower1513 in reply to CTGirl1962]

Thank you!!!! Yes that will help!

[Iwasborntodothis in reply to CTGirl1962]

Thank you!

[Best521]

You always have the best attitude and face things head on. Stay strong. Hoping Enhertu will work well for you.

[Iwasborntodothis in reply to Best521]

Thank you - although my attitude is generally good, I try to stay off of the site when I am low.

[13plus]

This is on my doc's list for future meds for me at #2. I'm getting scans tomorrow but expecting bad news. I was doing SO well on Xeloda until the last 2 months symptoms increasing again 😭. I so hear your frustration!!

I expect to be given Elecestrant next, which my doc apparently does NOT have high hopes for it working 😢 (so I hope it proves her wrong!) . All depending on my scan results I guess.

Wishing you the best for moving forwards with it all!

[Flower1513 in reply to 13plus]

So your doc wants to try Elecestrant before Enhertu? Mom recently found out she has a ers1 mutation so that opened up the door for Elecestrant but her oncologist wants to move forward with Enhertu! And she said put the Elecestrant in her back pocket. I’m just wondering why. I guess will ask Thursday. She starts Enhertu on Thursday . Thanks ❤️

[13plus in reply to Flower1513]

And all the best to your mum for Thursday!

[KMBL_ in reply to Flower1513]

Just to let you know I am starting Enhertu today, but I did do Elecestrant first. I made it 9.5 months. It wasn’t too bad.

[13plus]

TBH I didn't have a deep conversation with her about it yet. I think I didn't want to confront the likely reality that the Xeloda has now stopped working (Scans tomorrow) which is a bit unlike me. It's been a trying summer - I think I'm a bit over everything right now. I just want to go away on a long holiday! lol

It might be because there are less perceived side effects? I don't know, but she does know that QOL is very important to me. Anyway, they often have different orders they like to apply, and each of us are different, even when are cancer genetics align the same. It's time for me to do some research on all of this again!

[love2golfwell]

I'm so sorry you have to switch meds again. I truly hope that the Enhertu works well for you and brings your numbers back down and that you do not experience side effects. Stay strong and have faith. Sending you hugs and prayers.

[Iwasborntodothis in reply to love2golfwell]

Thank you!

[Totheriver]

Hope enhertu will work for you and wishing you all the best💕

[Iwasborntodothis in reply to Totheriver]

Thank you!

[Timtam56]

Positive or wallowing or whatever it takes. Just go easy on yourself. XXX

[Iwasborntodothis in reply to Timtam56]

Thank you so much - feeling much better about it today. It is what it is.

[13plus in reply to Iwasborntodothis]

How are you going? Did you start it yet?

[Iwasborntodothis in reply to 13plus]

Start on Monday the 9th

[13plus in reply to Iwasborntodothis]

Wishing you all the best for it. I’m actually still trying to decide what to do now I might have some trial options as well. It’s so hard to make these decisions.

Time for me to write another post!

[Pbsoup]

I know you are Facebook averse (I get it) but the Enhertu board there is very helpful. First because you can search by side effect and get all sorts of practical advice for what to do

. Second there are a lot of very positive stories. Yes there are some not so positive ones too, but you can ignore those. There are around 5000 members so it's a meaningful cohort.

I just started Enhertu, but from what I can tell it. is very effective for many women. And not all have bad side effects. I think two takeaways are hydrate more than you think you need to and stay at least somewhat active. I might get yelled at for this, but I think a lot of this journey comes down to mindset and just pushing through as much as possible.

[Iwasborntodothis in reply to Pbsoup]

Thank you and I agree with you 100% about mindset and I agree that some people might disagree with that outlook. We are here to support each other and offer advice and experience.

[13plus in reply to Pbsoup]

Do you know the exact name of the FB group? I couldn't find it

[Lilsusie]

Hang in there. I am coming up on my five year anniversary in December. I'm currently getting SBRT to my left hip and then seeing a specialist at Emory to review clinical trials and decide on a new treatment. Afinitor was a bust.

[Iwasborntodothis in reply to Lilsusie]

Thank you. I had hip radiation a few years ago and it helped with the pain immensely. They did not warn me about the burn from the therapy in the crease between my thigh and my crotch - that wasn't horrible but was uncomfortable for a brief period of time. You hang in there too!

[Iwasborntodothis]

I think it is important to share that Lymparza takes 2 months (per medical journal research) to really start working. My Ca15 actually leveled off (at 1200) in yesterday's labs as did my liver numbers. I was not supposed to have the correct gene or diagnosis for this drug and had to fight insurance to get it. It was a nice summer vacation from IV chemo and intestinal tract distress.

If I was earlier in my journey (5 yrs today) and treatment count (it was 7) and had not had such a dramatic near crash after Carbo last year, I would have dug in on sticking with this for another month. As I do understand and trust my team's plan, I moved on to Enhertu yesterday and feel pretty good this morning - waiting for pre-meds to wear off.

Just suggesting that you put it on your question list for line of treatment. It is a PARP inhibitor.

[Shafight]

I like your attitude!