Enhertu or Quit this Hamster Wheel?!

Posted by crowleykid @crowleykid, 2 days ago

@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.

How many cycles of enhertu have you had? I ask because I've had 9 cycles, after my cancer metastasized a few months after finishing carbo/pacl. GI problems are the main side fx, along with periodic vomiting (which I believe is caused by constipation). My last CT scan showed a 58% reduction in the size of the main tumor, although the inguinal nodes show no reduction they appear to be stable.
I've thought about quitting enhertu because of the GI misery it causes, but I'm hopeful that the doctor will find meds to relieve it. I'm try to stay optimistic, and look forward to my next CT scan. I will keep doing until I see no progress, or if something better comes along.
I can't recommend the End of Life option at this point in my journey.

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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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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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@cookercooker

How many cycles of enhertu have you had? I ask because I've had 9 cycles, after my cancer metastasized a few months after finishing carbo/pacl. GI problems are the main side fx, along with periodic vomiting (which I believe is caused by constipation). My last CT scan showed a 58% reduction in the size of the main tumor, although the inguinal nodes show no reduction they appear to be stable.
I've thought about quitting enhertu because of the GI misery it causes, but I'm hopeful that the doctor will find meds to relieve it. I'm try to stay optimistic, and look forward to my next CT scan. I will keep doing until I see no progress, or if something better comes along.
I can't recommend the End of Life option at this point in my journey.

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@cookercooker Thank you so much, we are indeed kindred spirits on the journey (or in this battle).

I am scheduled to start Enhertu on Wednesday, August 6. I don't feel strong enough - physically and mentally to even start again.

The surgery I referred to was a diverting colostomy. So I have a stoma now with a poop bag. That was July 2 and I still hate it. So I already deal with GI stuff.

Again, thank you so much. The End of Life act should be legal in all 50 states, we take care of our pets better than our people.

Hospice leaves eztra morphine. Extra morphine has been used by many to expedite things.

Not eating or drinking can take weeks, so I've been told, sounds awful.

I wish you the very best. Love.

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@crowleykid I was very sad when I read your post here. I have thought many times about what I would do should the recommended treatments outweigh my desire for my own quality of life. I am relieved to read that you attend 2 cancer support groups and you talk with a therapist who specializes in oncology. You have a good support network for yourself. Like @val64 I believe this is a decision only you can make and yet I would be very sad and upset if a loved one of mine made that decision. It's very difficult.

Are you familiar with Dr. Irvin Yalom? He is a renowned psychiatrist who published many books and articles. He is THE expert on Group Therapy and most mental health therapists have read his work. Dr. Yalom has also written fiction based on figures in history and he's written non-fiction. His most recent publication is a book that he and his now-late wife wrote together as her death was approaching from multiple myeloma. They are in California where she was able to make a plan for a physician assisted end of life. Marilyn Yalom was resolute in this plan and Dr. Irvin Yalom was bereft. I don't know if this book would speak to you but it certainly did to me as I read it in 2022 shortly after my own recurrence of endometrial cancer.

Yalom, Irvin & Yalom, Marilyn (2021). A Matter of Death and Life. Stanford, CA: Redwood Press.

-- https://www.yalom.com/a-matter-of-death-and-life

@crowleykid I hope you will allow our Support Group on Mayo Clinic Connect to help and support you in whatever you choose.

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I was diagnosed with stage 1 endometrial cancer as well and had a total hysterectomy 2 months ago. It surprises and scares me that it can jump from stage 1 to stage 4 in this way. May I ask the extent of stage 1 disease at diagnosis and the first place that it spread to? Also, how did you know it had spread? My first thought is for you to keep fighting, but I realize it may be a selfish response.

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@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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I'm so sorry that you have been fighting this beast for 4 years...I was diagnosed with uterine serous carcinoma in 2021 syage 1A ...however a rare aggressive cancer with a high rate of recurrance. It recurred in 2022 and I had 6 rounds of chemo with herceptin HER2 positive cancer. Was NED until April of 2025..started Enhertu in May and have had 5 treatments. I have been very fortunate to have few side effects... I'm told this is not unusual because Enhertu is a targeted chemo not systemic. Only you know what you are willing to endure, but that being said I think Enhertu is a very good option and less toxic than the chemo you have already had...Wishing you luck love and positive energy !

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@inquirer

I was diagnosed with stage 1 endometrial cancer as well and had a total hysterectomy 2 months ago. It surprises and scares me that it can jump from stage 1 to stage 4 in this way. May I ask the extent of stage 1 disease at diagnosis and the first place that it spread to? Also, how did you know it had spread? My first thought is for you to keep fighting, but I realize it may be a selfish response.

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@inquirer
I was Stage 1a and the cancer was only seen in the endometrial lining with a PET scan.

It was 6 mos. later when I felt 2 tumors in my abdomen. MRI showed them & biopsy confirmed.

But every story differs. Over 85% of women in my situation are done after the hysterectomy.

So don't waste your life force energy being scared. You may be 100% fine.

Gratitude for your reply.

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@crowleykid

@inquirer
I was Stage 1a and the cancer was only seen in the endometrial lining with a PET scan.

It was 6 mos. later when I felt 2 tumors in my abdomen. MRI showed them & biopsy confirmed.

But every story differs. Over 85% of women in my situation are done after the hysterectomy.

So don't waste your life force energy being scared. You may be 100% fine.

Gratitude for your reply.

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Thank you! I was stage 1a with cancer found only in the endometrial lining too; we are exactly the same. What scares me is having waited 2.5 months after diagnosis for surgery. Did it spread in that time?. Only time will tell, but I will be checking my abdomen for tumors. Thanks for that insight. Please hang in there! Let me know if I can be of help.

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@inquirer
I don't mean to alarm you but I do not know how common the abdomen is as a location for recurrence. That would be a question for your doctor.

When I did see my doctor she could not feel the tumors, only I could. She was ready to give me the green light.

Thanks for your reply & offer to help.

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