Cancer Support
Related: About this forumUpdate: 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!!
Solly Mack
(97,240 posts)You're right, hang in there!
Sparkly
(24,938 posts)I surprised myself! Honestly did not think it would happen.
questionseverything
(11,937 posts)I hope you get a miracle!
Sparkly
(24,938 posts)is kind of one, but I can always hope for more... like outliving the orange cretin in the White House.
hlthe2b
(114,550 posts)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.
Sparkly
(24,938 posts)Much appreciated!
senseandsensibility
(25,469 posts)I hope you have many more good days ahead of you my friend.
Sparkly
(24,938 posts)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
(24,467 posts)Lots of us dealing with the big C so we'll all pull together for you!
Sparkly
(24,938 posts)It's such a monster. Someday, the key to a cure will be found, no doubt.
Chicagogrl1
(661 posts)Sparkly
(24,938 posts)paleotn
(22,636 posts)It is truly appreciated.
Grim Chieftain
(1,988 posts)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.
Sparkly
(24,938 posts)Thanks for thinking of me.
Fla Dem
(27,754 posts)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)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
(38,495 posts)...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)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
(13,388 posts)your granddaughter. Hang in there, don't give up. Sending positive thoughts for your next birthday.
Sparkly
(24,938 posts)The experience of seeing her grow is like nothing else! Thank you for the positive thoughts!
Joinfortmill
(21,603 posts)Sparkly
(24,938 posts)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.
BaronChocula
(4,709 posts)Sending positive thoughts.
Sparkly
(24,938 posts)Thanks for the positive thoughts!
sheshe2
(98,341 posts)Sparkly
(24,938 posts)SheltieLover
(81,593 posts)Fucking ins cos...
Healing vibes flowing to you.
Sparkly
(24,938 posts)And I agree about insurance co's. Thanks for the vibes!!
spooky3
(38,837 posts)Saw your granddaughters second birthday and are doing well despite Kaisers bad behavior. Sending positive vibes your way!
Sparkly
(24,938 posts)Thanks!
mountain grammy
(29,177 posts)Sounds positive.. Hoping for the best! Happy Birthday and to the miracle granddaughter too!
Sparkly
(24,938 posts)which isn't bad at all! Thanks for the good wishes!
1WorldHope
(2,126 posts)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)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
(27,667 posts)be keeping your spirits up and staying positive. Wishing the best for you, Sparkly.
Sparkly
(24,938 posts)And thank you, friend!
Scrivener7
(60,043 posts)Sparkly
(24,938 posts)Anything is possible! Thanks, Scrivener7.
ms.pamela
(90 posts)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)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.
MLAA
(19,791 posts)Sparkly
(24,938 posts)"Sparkle on!"
Sounds like it should have been a disco tune back in the day (or one of my outfits)!
calimary
(90,673 posts)What a great slogan! Short n VERY sweet!
Just glad youre still here!
Sparkly
(24,938 posts)I'm glad you - and all of DU - are here!!!
sinkingfeeling
(58,001 posts)Sparkly
(24,938 posts)Much appreciated!
mwmisses4289
(4,654 posts)Sparkly
(24,938 posts)gademocrat7
(12,013 posts)Sending you lots of healing hugs and love. Stay strong.🤗
Sparkly
(24,938 posts)Thank you for the encouragement, hugs and love.
Cha
(320,431 posts)little cyber
I say this to myself when I need it. And you are so Strong.
"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
(320,431 posts)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.
💙 ☮️
🌻🕯️🕊️💜
HeartsCanHope
(1,752 posts)You and your family will be in my thoughts and heart.