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Sparkly

(24,938 posts)
Tue May 12, 2026, 07:04 PM 21 hrs ago

Update: Still stage 4, still alive, now on Enhertu

Hi DU friends!

Just checking in! I made it past another birthday, and more happily, I made it to my miracle granddaughter's second!!!

I still have serous endometrial carcinoma metastasized to my lungs. It never even reached a lymph node, but Kaiser made me wait so long for surgery from an in-network surgeon when it was first diagnosed, it got through the pelvic wall and into my bloodstream, apparently. I will never stop wishing I'd insisted harder, or offered to travel or something, anything, but I did all the pleading I could. Too late now.

Regrets aside, the cancer is still HER2-positive, which means it can be treated with Herceptin (Trastuzumab), a monoclonal antibody, but that stopped working. Enhertu adds deruxtecan, which is the chemo "payload," so it's an "antibody-drug conjugate" (ADC).

The chemo is not as bad as carbotaxol. It causes fatigue and nausea, and some people lose all their hair (mine has thinned a bit). The good news is my tumors were smaller on the last scan. Dangerous side effects happen to lungs and heart and I had a little scare there -- some odd "nodules" like bronchiolitis (?) that made me afraid they were going to stop my infusions -- but a pulmonologist said they didn't look like Enhertu caused them, and I think I'm okay.

Hope all of you and yours are doing well, too! Every day matters. Hang in there!!

69 replies = new reply since forum marked as read
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Update: Still stage 4, still alive, now on Enhertu (Original Post) Sparkly 21 hrs ago OP
How wonderful to see your granddaughter's 2nd birthday! And your birthday, too!!!! Solly Mack 21 hrs ago #1
Thanks! Sparkly 17 hrs ago #29
💐🫶🏽 blm 21 hrs ago #2
Thanks, blm Sparkly 17 hrs ago #30
Fuck kaiser and all private insurers that make their money by withholding treatment questionseverything 21 hrs ago #3
Being around this long Sparkly 17 hrs ago #31
'Thrilled to get this update, Sparkly! hlthe2b 21 hrs ago #4
Thank you Sparkly 17 hrs ago #32
Good to hear that you made it to your granddaughter's B-day! senseandsensibility 21 hrs ago #5
Afraid to hope to make it to her 3rd Sparkly 17 hrs ago #33
Sending you big hugs and the best of all wishes. erronis 21 hrs ago #6
We pull for each other! Sparkly 17 hrs ago #34
Hugs to you Chicagogrl1 21 hrs ago #7
Back atcha! Sparkly 17 hrs ago #35
Best thoughts!!! Hang in there. We're with you! paleotn 21 hrs ago #8
Thanks! Sparkly 17 hrs ago #36
Stay strong, dear Sparkly Grim Chieftain 21 hrs ago #9
Much appreciated, GC Sparkly 17 hrs ago #37
You're certainly on a stressful and dramatic journey. Fla Dem 21 hrs ago #10
I have amazing sisters Sparkly 17 hrs ago #38
Good luck with the treatment. I'm at a scientific meeting... NNadir 21 hrs ago #11
That's really good to hear, NNadir Sparkly 17 hrs ago #39
So glad you are still alive and was able to celebrate another birthday and that of LoisB 20 hrs ago #12
I hope so! Sparkly 17 hrs ago #40
Oh, my. Glad you are ok. Prayed for you. Can't hurt, right? Joinfortmill 20 hrs ago #13
Thank you for praying for me!! Sparkly 16 hrs ago #41
Oh, my, what a profound experience. Joinfortmill 9 hrs ago #61
Keep that infectious spirit BaronChocula 20 hrs ago #14
I'll sure try! Sparkly 16 hrs ago #42
A big hug for you, Sparkly. sheshe2 20 hrs ago #15
Aw, back atcha sheshe Sparkly 16 hrs ago #43
So glad you had a happy birthday and got to see your precious grandaughter's 2nd! SheltieLover 20 hrs ago #16
Me, too Sparkly 16 hrs ago #44
Thank you for updating us! I'm happy for you that you spooky3 20 hrs ago #17
Vibes welcome Sparkly 16 hrs ago #45
++++++ spooky3 14 hrs ago #59
Thanks fo the update Sparkly.. mountain grammy 20 hrs ago #18
As positive as it can be right now Sparkly 16 hrs ago #46
It's good to see progress. It's quite an eye opener to find yourself going through this is my guess. 1WorldHope 20 hrs ago #19
Yes and yes Sparkly 16 hrs ago #47
So Sparkly married Stinky. You two must be fun! 1WorldHope 5 hrs ago #67
In such a time of stress and uncertainty, you seem to brer cat 20 hrs ago #20
I try, brer cat Sparkly 16 hrs ago #48
Happy birthday, and may this be the year that your scans show NO tumors. Scrivener7 19 hrs ago #21
Who knows? Sparkly 16 hrs ago #49
Keep up the fight ms.pamela 19 hrs ago #22
Good perspective Sparkly 16 hrs ago #50
Sending warm thoughts and good energy to you, dear Sparkly. Sparkle on! 💕 MLAA 19 hrs ago #23
I like that motto Sparkly 16 hrs ago #51
Agree! And was likely in the name of our eye shadow! MLAA 6 hrs ago #64
Yep! Every day matters! calimary 18 hrs ago #24
Thanks, calimary!! Sparkly 16 hrs ago #52
Best wishes for your continued improvement. sinkingfeeling 18 hrs ago #25
Thanks Sparkly 16 hrs ago #53
🫂 to you and your family. mwmisses4289 18 hrs ago #26
Thank you, mwmisses Sparkly 16 hrs ago #54
Happy Birthday, Sparkly gademocrat7 18 hrs ago #27
I shall try Sparkly 16 hrs ago #55
Sparkly, you're a beautiful, and courageous soul. Cha 17 hrs ago #28
Oh, Cha!!! Sparkly 16 hrs ago #56
Yes, I 've found that to be perfectly true Cha 16 hrs ago #57
Sending healing vibes and hugs. HeartsCanHope 14 hrs ago #58
Keep on going, Sparkly. democrank 11 hrs ago #60
Glad to hear you are hanging in there, fighting. Trueblue Texan 9 hrs ago #62
Prayers for miracles 🙏🏼 Sparkly Clouds Passing 6 hrs ago #63
Every day is a good day Wild blueberry 5 hrs ago #65
Sparkly, I remember your name from way back - TBF 5 hrs ago #66
Grand to hear from you, Sparkly! babylonsister 5 hrs ago #68
Keep the positivity going BeneteauBum 15 min ago #69

Solly Mack

(97,244 posts)
1. How wonderful to see your granddaughter's 2nd birthday! And your birthday, too!!!!
Tue May 12, 2026, 07:07 PM
21 hrs ago

You're right, hang in there!

questionseverything

(11,937 posts)
3. Fuck kaiser and all private insurers that make their money by withholding treatment
Tue May 12, 2026, 07:15 PM
21 hrs ago

I hope you get a miracle!

Sparkly

(24,938 posts)
31. Being around this long
Tue May 12, 2026, 11:28 PM
17 hrs ago

is kind of one, but I can always hope for more... like outliving the orange cretin in the White House.

hlthe2b

(114,564 posts)
4. 'Thrilled to get this update, Sparkly!
Tue May 12, 2026, 07:20 PM
21 hrs ago

I hear you on the failure to follow-up promptly by your providers, yet I also see your positive attitude coming through. I hope you sustain that as these medical options work for you. I feel and send positive thoughts, prayers, vibes your way.

senseandsensibility

(25,473 posts)
5. Good to hear that you made it to your granddaughter's B-day!
Tue May 12, 2026, 07:27 PM
21 hrs ago

I hope you have many more good days ahead of you my friend.

Sparkly

(24,938 posts)
33. Afraid to hope to make it to her 3rd
Tue May 12, 2026, 11:32 PM
17 hrs ago

but I do, anyway. I wish she could remember me. But having the experience of knowing her is enough, really.

Thanks for the good wishes.

erronis

(24,468 posts)
6. Sending you big hugs and the best of all wishes.
Tue May 12, 2026, 07:31 PM
21 hrs ago

Lots of us dealing with the big C so we'll all pull together for you!

Sparkly

(24,938 posts)
34. We pull for each other!
Tue May 12, 2026, 11:35 PM
17 hrs ago

It's such a monster. Someday, the key to a cure will be found, no doubt.

Grim Chieftain

(1,991 posts)
9. Stay strong, dear Sparkly
Tue May 12, 2026, 07:38 PM
21 hrs ago

If you are the least bit dissatisfied with your doctors or insurance, fight with all your might. You deserve the best.

Take care friend, and please keep us posted. You're in my thoughts.


Fla Dem

(27,755 posts)
10. You're certainly on a stressful and dramatic journey.
Tue May 12, 2026, 07:39 PM
21 hrs ago

But sounds like you're dealing with the best you can. I hope you have family/friends to support you and buoy you up when you need it.

All the best to you, I hope for a successful outcome for you.

Sparkly

(24,938 posts)
38. I have amazing sisters
Tue May 12, 2026, 11:42 PM
17 hrs ago

and awesome friends, as well as a caring daughter and husband, plus two dogs who never leave me alone!!

Thanks for your kind note!

NNadir

(38,505 posts)
11. Good luck with the treatment. I'm at a scientific meeting...
Tue May 12, 2026, 07:51 PM
21 hrs ago

...where things I would have imagined even five years ago are pouring forth.

I'm aware of anything magic, but Her2 is still better than BRCA although there are advanced there as well.

You sound really together. It seems to me that life is more beautiful when we stare down our mortality by still taking joy in living.

Continue to live well.

Best wishes.

Sparkly

(24,938 posts)
39. That's really good to hear, NNadir
Tue May 12, 2026, 11:45 PM
17 hrs ago

I miss my vitality, and I feel guilty for the days that go by that I waste. I think it takes some focus to live well, and I'm still figuring that out.

LoisB

(13,393 posts)
12. So glad you are still alive and was able to celebrate another birthday and that of
Tue May 12, 2026, 07:59 PM
20 hrs ago

your granddaughter. Hang in there, don't give up. Sending positive thoughts for your next birthday.

Sparkly

(24,938 posts)
40. I hope so!
Tue May 12, 2026, 11:47 PM
17 hrs ago

The experience of seeing her grow is like nothing else! Thank you for the positive thoughts!

Sparkly

(24,938 posts)
41. Thank you for praying for me!!
Wed May 13, 2026, 12:00 AM
16 hrs ago

No, it can't hurt!! More than once, I prayed for my daughter's life to be saved - she was in the throes of heroin addiction for many years - and for mine to be taken, especially if she could become healthy enough to have a child of her own (which doctors thought might not be possible). By all statistics and common sense, there is no way for her to have lived through what she did and recovered, but she did!

She completely turned her life around and found a way to thrive. At the same time, I found out I have a deadly cancer. And then, while I was going through treatment, we found out she was pregnant!! Life is strange ... but it's made me wonder about prayers, or at least fervent wishes.

SheltieLover

(81,595 posts)
16. So glad you had a happy birthday and got to see your precious grandaughter's 2nd!
Tue May 12, 2026, 08:08 PM
20 hrs ago


Fucking ins cos...

Healing vibes flowing to you.

spooky3

(38,839 posts)
17. Thank you for updating us! I'm happy for you that you
Tue May 12, 2026, 08:17 PM
20 hrs ago

Saw your granddaughter’s second birthday and are doing well despite Kaiser’s bad behavior. Sending positive vibes your way!

mountain grammy

(29,178 posts)
18. Thanks fo the update Sparkly..
Tue May 12, 2026, 08:27 PM
20 hrs ago

Sounds positive.. Hoping for the best! Happy Birthday and to the miracle granddaughter too!

1WorldHope

(2,127 posts)
19. It's good to see progress. It's quite an eye opener to find yourself going through this is my guess.
Tue May 12, 2026, 08:29 PM
20 hrs ago

The treatment process kind of becomes your life. I hope you love the people you spend your treatment times with. Just keep sending out and openly receiving the love that is around you. Keep being sparkly ✨

Sparkly

(24,938 posts)
47. Yes and yes
Wed May 13, 2026, 12:10 AM
16 hrs ago

It does change life and perspective, and I do love the nurses in the infusion center!! Various friends drive me there because they give me meds that make me super drowsy, and my husband (Stinky) is limited in driving lately. It's nice to see them, even though I'm mostly too out of it for that to be a real social visit.

brer cat

(27,668 posts)
20. In such a time of stress and uncertainty, you seem to
Tue May 12, 2026, 08:36 PM
20 hrs ago

be keeping your spirits up and staying positive. Wishing the best for you, Sparkly.

ms.pamela

(90 posts)
22. Keep up the fight
Tue May 12, 2026, 09:29 PM
19 hrs ago

So many people I know who have cancer or other serious diseases had or have Kaiser, many women, especially over 65, are brushed off about their symptoms and complaints. My son-law's aunt went to a Kaiser doctor about bad back pain and was told over and over it was nothing serious, six months later she found out she had stage 3 blood cancer, there is not a stage 4 with this cancer. The aunt sent her first MRI before her doctor even saw it, to my daughter who is a pharmaceutical scientist, who was sick to discover her husband's aunt had very active cancer in her bones. My other daughter is a nurse and has Kaiser, she has had to investigate her own symptoms because the doctors cannot put two and two together, her copper rates were dangerously high, and she had to get genetic tests on her own(Kaiser did finally pay for most of them) to see she had a disease that could cause this, she did not and they still can't figure it out. I could go on about this and believe me my daughter advocates for herself quite well, so don't beat yourself up thinking you could have done more. Kaiser isn't the only insurance that waits too long for life saving treatments. I am hearing more and more stories about women's cancer that was not discovered after many of these ladies had gone to their doctors about what would be obvious cancer symptoms. Please live as well as possible and fight like hell, this is what a lady I know of who has had cancer four times now imparts to others with cancer, she is 88 years old.

Sparkly

(24,938 posts)
50. Good perspective
Wed May 13, 2026, 12:20 AM
16 hrs ago

I appreciate that. I don't know if it's Kaiser, all HMOs, or all insurance plans in general, but it was a horrible situation. I needed surgery much sooner than I had it. "Live as well as possible" is all I can do now.

Sparkly

(24,938 posts)
51. I like that motto
Wed May 13, 2026, 12:21 AM
16 hrs ago

"Sparkle on!" Sounds like it should have been a disco tune back in the day (or one of my outfits)!

calimary

(90,677 posts)
24. Yep! Every day matters!
Tue May 12, 2026, 10:03 PM
18 hrs ago

What a great slogan! Short ‘n’ VERY sweet!

Just glad you’re still here!



Cha

(320,433 posts)
28. Sparkly, you're a beautiful, and courageous soul.
Tue May 12, 2026, 11:22 PM
17 hrs ago
soorry I can't help it.. 💔 💙 ☮️ 🌻🕯️🕊️💜

little cyber grateful for any progress you make.

"You never know how strong you are until being strong is your only choice" is widely attributed to reggae legend Bob Marley

I say this to myself when I need it. And you are so Strong.

Sparkly

(24,938 posts)
56. Oh, Cha!!!
Wed May 13, 2026, 12:31 AM
16 hrs ago
Thank you, my dear sweet friend!!

"You never know how strong you are until being strong is your only choice."

I hadn't heard that quote before, but it's perfect. In so many ways, it's always been perfect, right?! I'll remember it. Thank you (and Bob Marley).



Cha

(320,433 posts)
57. Yes, I 've found that to be perfectly true
Wed May 13, 2026, 12:56 AM
16 hrs ago

a few times over the years. I saw it on FB years ago.

I was going to paraphrase, but decided to look it up and post the exact Bob Marley quote.

Love you, Sparkly, Strong Woman. 💙 ☮️ 🌻🕯️🕊️💜

Trueblue Texan

(4,594 posts)
62. Glad to hear you are hanging in there, fighting.
Wed May 13, 2026, 07:02 AM
9 hrs ago

Congratulations on yours and granddaughter's birthday. May you have all the joy you deserve along with ever increasing good health in the coming days.

Wild blueberry

(8,366 posts)
65. Every day is a good day
Wed May 13, 2026, 10:59 AM
5 hrs ago

Happy Birthday!
You'll laugh, but my first thought reading your headline is that you were traveling in space and had made it to a planet (Enhert) I'd not hear of yet.
All the best to you!

TBF

(37,113 posts)
66. Sparkly, I remember your name from way back -
Wed May 13, 2026, 11:23 AM
5 hrs ago

You have the best possible attitude, and I'm sure that is helping your treatment substantially! Thanks so much for checking in with us!

babylonsister

(172,799 posts)
68. Grand to hear from you, Sparkly!
Wed May 13, 2026, 11:51 AM
5 hrs ago

You sound really good, and your uplifting spirit shines through. So happy you're meeting your miracle milestones, and YOU hang in there. Love to you and your family.

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