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.

crowleykid | @crowleykid | 5 days ago

In reply to @margitdill "I know … I know. I’m taking Zofran and 1000 mg of ginger to help with..." + (show)

Zofran 4mg should be 8mg, for me. Maybe that will help?

Alternating a 2nd nausea Rx too. Promethazine was given in the ER yesterday via IV.

How many DAYS does this last? I am wishing you all the best.

Thanks @margitdill

margitdill | @margitdill | 4 days ago

In reply to @crowleykid "Zofran 4mg should be 8mg, for me. Maybe that will help? Alternating a 2nd nausea Rx..." + (show)

Hi … yes the Zofran is 4 mg … so it’s okay to bump up to 8 mg? If so I will do that.

I have the other drug as a suppository. Have not used it yet cause now I have developed diarrhea.
I’m sipping on ginger tea tonight.
It has been lasting about a week. It used to be just mornings. But today the queasiness has been all day, do relief.

Thank you!

crowleykid | @crowleykid | 4 days ago

In reply to @margitdill "Hi … yes the Zofran is 4 mg … so it’s okay to bump up to..." + (show)

@margitdill

Ugh, even the word queasy gets me now. So very sorry you're dealing with all of this.

I would definitely ask a professional about taking more anti-nausea medication & more often. I landed in the ER needing hydration because I couldn't even keep water down.

A,week is long enough! This is nuts. Hang in there.

margitdill | @margitdill | 3 days ago

In reply to @crowleykid "@margitdill Ugh, even the word queasy gets me now. So very sorry you're dealing with all..." + (show)

The 8 mg dose has really helped … so has ginger tea and ginger ale. So I will keep that up and hang in there! Thank you!

cookercooker | @cookercooker | 3 days ago

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.

jchantler | @jchantler | 3 days ago

This sounds ghastly. So sorry you have to go throught it. FYI I am taking Clear Lax, compare to Mira Lax in the morning and Ducosate Sodium 100 mg at night and it works well for me. It's not for Enhertu, but because I have cancer nodules attached to my colon, as I understand it.

crowleykid | @crowleykid | 3 days ago

In reply to @cookercooker "Ondasetron (Zofran) causes constipation, something I've really been struggling with after Enhertu infusions. It comes on..." + (show)

@cookercooker
I feel your pain and I'm right there with you and I'm so sorry you're dealing with it too.

I was prescribed something that actually worked and believe it or not I only took it once and it fixed me. It's called Lactulose. It's prescribed as taking 15 to 30 ml three times a day and I only took one dosage at 15 and that's all I needed. I was very careful because I know what happens when the pendulum keeps swinging back and forth from diarrhea to constipation and back again.

That helps with constipation, but this nausea on Day 8 post-infusion is awful.

I wish you the best! Take care. Lizzz

cookercooker | @cookercooker | 2 days ago

In reply to @crowleykid "@cookercooker I feel your pain and I'm right there with you and I'm so sorry you're..." + (show)

When you say nausea, where it it coming from? I am experiencing what feels like a blockage high up in my GI, right side to mid-line.

crowleykid | @crowleykid | 2 days ago

In reply to @cookercooker "When you say nausea, where it it coming from? I am experiencing what feels like a..." + (show)

@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.

cookercooker | @cookercooker | 2 days ago

In reply to @crowleykid "@cookercooker I don't have a specific location, like you do, for nausea. Darn, it sounds awful...." + (show)

Thank you< 3

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