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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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margitdill | @margitdill | Aug 21 1:16pm
In reply to @cookercooker "Ondasetron (Zofran) causes constipation, something I've really been struggling with after Enhertu infusions. It comes on..." + (show)
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Ondasetron (Zofran) causes constipation, something I've really been struggling with after Enhertu infusions. It comes on about two days after chemo and lasts well into the 7th day. Have been trying everything to resolve it, but without much luck. I swear the constipation is causing the nausea and told my oncologist so.
Senna pills before bedtime and stool softeners whenever sort of help, but there is a still a full and very uncomfortable feeling under my diaphragm. Burping and gas is frequent and annoying. I have to be careful not to take too much senna for fear of getting diarrhea. Tried Restoralax, but that kept me up all night feeling nauseous. Ginger tea helps a little bit but is short lived. I also mix in a bit of lemon juice and honey to make it palatable. As for dosage of Zofran, the oncologist cut it back to half a pill (I don't remember the mg of it) to avert constipation, but that didn't help. Just saying.

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I can relate to all this. Right now what helps me with constipation is ducolax tablets -my palliative care doctor said these work better than senna. She’s right. I also use ducolax suppositories. They help.

I have been prescribed the stool softener Linezz but I don’t feel it works well for me at all.

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cookercooker | @cookercooker | Aug 21 5:20pm
In reply to @margitdill "I can relate to all this. Right now what helps me with constipation is ducolax tablets..." + (show)
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I can relate to all this. Right now what helps me with constipation is ducolax tablets -my palliative care doctor said these work better than senna. She’s right. I also use ducolax suppositories. They help.

I have been prescribed the stool softener Linezz but I don’t feel it works well for me at all.

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OK. Thank you. My study nurse also suggested Restoralax gummies. I can't drink that stuff because it reminds me of the preparation you have to take before a colonoscopy. Yuck.

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cookercooker | @cookercooker | Sep 25 9:40am

I want to reiterate: Enhertu works! My latest CT scan showed no evidence of main tumour in vaginal cuff, and reduced size of affected para-aeortic lymph node. This news comes after 11 cycles of enhertu.
I was diagnosed with stage 3C2 endometrial serous cell cancer. Previous to enhertu, I had been given carbo/pac. regimen which worked for 4 months; the cancer returned.

So, please don't step off the hamster wheel. There is hope for you yet!

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debracinnamon | @debracinnamon | Sep 25 10:30am

I don't have the same cancer as you but I have gone through hell with my own and developed autoimmune conditions that are almost as bad as having the cancer. It sounds like you had a real zest for life before you developed your cancer. I feel the way you do and I contemplate the same things you are sharing. I am in Illinois and the law that you have in CA is not available here. You may never have to use it but I think it would be comforting to have it as an option. I have been around until the last moment for various people in my life and I would like to die with the dignity cancer has stolen. Thank you for sharing your feelings. This is not an easy subject but people like you being open is what we need more of.

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cookercooker | @cookercooker | Sep 26 10:45am

I'm on a clinical study, which is also available to patients/participants around the globe, including the US. The study drug's focus is on HER2 +2, +3. I can't remember what your cancer prognosis is, sorry.
Ask your doc about this study and any other clinical trials available for your type of cancer

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Helen, Volunteer Mentor | @naturegirl5 | Sep 26 11:42am
In reply to @crowleykid "@cookercooker I don't have a specific location, like you do, for nausea. Darn, it sounds awful...." + (show)
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@cookercooker

I don't have a specific location, like you do, for nausea. Darn, it sounds awful. I'm just so sorry. I hope your team will investigate and figure it out.

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@crowleykid We haven't heard from you in a few weeks. I'm wondering how you are doing?

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