1. < Gynecologic Cancers
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Enhertu or Quit this Hamster Wheel?!

Posted by crowleykid @crowleykid, Aug 3 9:28am

@again2 I really feel for you and relate to a lot of what you said.
The endometrial cancer I had was stage 1 and they did a total hysterectomy. But as soon as I had my first recurrence I was grouped with Stage 4 for treatment.
I did 6 rounds of Carbo/Taxel with Keytruda as part of a Clinical Trial.
I was lucky I reached “NED” (No Evidence of Disease) but Keytruda gave me pneumonitis. The Prednisone was worse than the pneumonia.
After the 2nd recurrence I was in another clinical trial and took Abemaciclib (Verzenio) with Letrozole.
Again, I reached NED, but the Verzenio was preventing the pneumonia from going away (2 years).
I stopped the Verzenio, the pneumonia cleared up and I now have a 3rd recurrence including 15-20 lesions on the liver. The recurring tumor outside the colon, invaded the colon, so I needed surgery to prevent blockage.
I’m now being offered Enhertu chemo treatments because I refuse to do Carbo/Doxil.
It’s 4 years and I’m ready to be done.
I’m in 2 Cancer Support Groups weekly and I have a wonderful Oncological therapist. I journal, I meditate, I rest, hydrate and walk when I feel ok. (I walked 6 or 7 days a week before the colon surgery.)
I think my body is responding to my lack of willingness to endure more chemo. I’m already fatigued and yesterday puked. Anticipation of side effects?!
CA is a state with End of Life Care (Death with Dignity). It would be peaceful, painless and quick. I’ve researched it. Thoughts?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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inquirer | @inquirer | Aug 5 12:46am

I don't know that I would feel them either, but I'm going to try. Regarding places for recurrence, my doctor has already given several but I find the experiences of people in this group most useful (they're reality). In response to my offer of help, you're welcome and I meant it! Private message me if you want to talk and I'll give you my number.

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lilypearl | @lilypearl | Aug 9 12:49pm
In reply to @again2 "I am truly sorry that you too have had such a hard time all these years...." + (show)
Profile picture for again2 @again2

I am truly sorry that you too have had such a hard time all these years. I wouldn't wish our troubles on anybody. I do appreciate that you truly know how I've been feeling...even my husband doesn't really understand. He's in denial.Right now he thinks I should continue to go for this new treatment because it might work and it's worth it. I'm the one suffering from previous attempts and will have even more with a new treatment.
If NewYork state passed the death with dignity I would go for it. It passed again this year but the governor didn't sign the bill and nothing will happen.
Many years ago I thought Dr.Kavorkian was right in helping people end their life. But he's gone.The only person who matters is the patient.No politician,medical person or family should have a say.The patient should be able to decide what to do and when.
I'm not looking forward to more pain. I just can't take it.
You do what's best for you. You don't need anybody else to advise.You are the best judge of you.

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We treat our pets with more dignity and compassion at the end of their lives.
Just my opinion.
I'm researching options.
I get a magazine called "Compassion& Choices".
There's the Compassion & Choices Action Network that focuses on federal and state legislative work promoting dying with dignity.
Empowers everyone to chart their own E-of-L journey.
CAndC.org

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again2 | @again2 | Aug 9 5:23pm

Thank you for this. I'm going to check it out now.
My computer is acting crazy and not working as it used to.
Sorry it took me so long.

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crowleykid | @crowleykid | Aug 10 9:08pm
In reply to @val64 "I agree that this is a decision you should be able to make. I haven't considered..." + (show)
Profile picture for val64 @val64

I agree that this is a decision you should be able to make. I haven't considered it for myself, since it's not legal in my state, and if someone I was close to did it, I imagine I'd be upset. I'm also imagining a lot of paperwork and bureaucracy.

Have you looked into palliative care and/or hospice? My uncle was in hospice for less than 24 hrs, but my aunt asked people to make contributions in his memory to the hospice. It made me wonder if they were providing a service that wasn't technically legal.

It's also possible that Enhertu will have minimal side effects for you and will make you feel better.

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@val64
Thanks for your message.
I agree: "It's also possible that Enhertu will have minimal side effects for you and will make you feel better."

I'm going to try 2 Enhertu infusions, then a CT scan.

Yes, I work with a palliative care MD and I have been for over a year now.

Hospice will be part of this loop.

After writing my original message, I spent 2 nights & 3 days in a hallway ER department! No sleep. Now I'm in a wonderful hospital with excellent staff and really good food.

They might allow the Enhertu infusion to be administered bedside. Fingers crossed.
Love, Lizzz

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crowleykid | @crowleykid | Aug 17 3:29pm
In reply to @crowleykid "@val64 Thanks for your message. I agree: "It's also possible that Enhertu will have minimal side..." + (show)
Profile picture for crowleykid @crowleykid

@val64
Thanks for your message.
I agree: "It's also possible that Enhertu will have minimal side effects for you and will make you feel better."

I'm going to try 2 Enhertu infusions, then a CT scan.

Yes, I work with a palliative care MD and I have been for over a year now.

Hospice will be part of this loop.

After writing my original message, I spent 2 nights & 3 days in a hallway ER department! No sleep. Now I'm in a wonderful hospital with excellent staff and really good food.

They might allow the Enhertu infusion to be administered bedside. Fingers crossed.
Love, Lizzz

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Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another ER fixing dehydration from vomiting. IV anti-nausea needed a 2nd Rx, it just won't let go.
I doubt I'll put myself through this again! Awful.

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val64 | @val64 | Aug 17 4:22pm
In reply to @crowleykid "Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another..." + (show)
Profile picture for crowleykid @crowleykid

Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another ER fixing dehydration from vomiting. IV anti-nausea needed a 2nd Rx, it just won't let go.
I doubt I'll put myself through this again! Awful.

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I'm so sorry to hear that the Enhertu is making you even more miserable.

I can sympathize with the ER experiences. I was trying to join a clinical trial, which has left me basically off treatment for a month. My cancer has run wild in my abdomen.

I've been to the ER twice this week, the second time begging for a paracentesis to drain the fluid in my belly. (I had an appointment for this coming Tuesday, but I couldn't take it anymore.). It did get done the next day, after a night in the ER, but I had to miss my appointment for my first dose of Doxil/ Avastin, which will now be tomorrow. I'm still hoping that will do something fast.

I feel terrible and can barely climb a flight of stairs. This is not going to be pretty.

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Helen, Volunteer Mentor | @naturegirl5 | Aug 17 7:35pm
In reply to @crowleykid "Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another..." + (show)
Profile picture for crowleykid @crowleykid

Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another ER fixing dehydration from vomiting. IV anti-nausea needed a 2nd Rx, it just won't let go.
I doubt I'll put myself through this again! Awful.

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@crowleykid Oh, I'm sad to hear this. On the one hand it's great that the infusion at bedside went so well. On the other hand, the side effects are terrible. You wrote your post 4 hours ago. How are you feeling now? I'm really hoping that the vomiting and dehydration lets up soon.

Will you talk with your oncologist about whether or not you will try a 2nd infusion?

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margitdill | @margitdill | Aug 18 9:37am
In reply to @crowleykid "Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another..." + (show)
Profile picture for crowleykid @crowleykid

Enhertu infusion #1 at the bedside was easy, but side effects are awful. I'm in another ER fixing dehydration from vomiting. IV anti-nausea needed a 2nd Rx, it just won't let go.
I doubt I'll put myself through this again! Awful.

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I’m with you … infusion 1 the side effects were intolerable. I agreed to a reduced dose for infusion 2. It was a little better but I was still nauseous and tired. I have had several chemo drugs over two years. ENHERTU has been the most challenging.

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crowleykid | @crowleykid | Aug 18 10:18am
In reply to @naturegirl5 "@crowleykid Oh, I'm sad to hear this. On the one hand it's great that the infusion..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@crowleykid Oh, I'm sad to hear this. On the one hand it's great that the infusion at bedside went so well. On the other hand, the side effects are terrible. You wrote your post 4 hours ago. How are you feeling now? I'm really hoping that the vomiting and dehydration lets up soon.

Will you talk with your oncologist about whether or not you will try a 2nd infusion?

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@naturegirl5
I was able to sleep, but woke with puking and new joint pain.

It's a long ways a way to talk about,Enhertu # 2, for next.

I first have to get past Enhertu # 1.

I can takes sips of water and it stays down.

@margitdill My 1st round of Carboplatin, Taxilpaxil * Ketruda was very difficult too. I thought Enhertu would be easier. NOT!

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margitdill | @margitdill | Aug 18 11:40am
In reply to @crowleykid "@naturegirl5 I was able to sleep, but woke with puking and new joint pain. It's a..." + (show)
Profile picture for crowleykid @crowleykid

@naturegirl5
I was able to sleep, but woke with puking and new joint pain.

It's a long ways a way to talk about,Enhertu # 2, for next.

I first have to get past Enhertu # 1.

I can takes sips of water and it stays down.

@margitdill My 1st round of Carboplatin, Taxilpaxil * Ketruda was very difficult too. I thought Enhertu would be easier. NOT!

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I know … I know. I’m taking Zofran and 1000 mg of ginger to help with the nausea. It is worse in the morning. I’m eating Saltines til it gets better. Sending love!

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