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When to stop treatments, supporting my Dad

I am posting for support as a caregiver to my Dad.

My Dad's medical case is very complicated. Today, my Dad is 88.5 years old.

In the mid 2000's he was diagnosed with prostate cancer and had radiation and chemo. His PSA remained less than 1 up until 2020.

Around the year 2000 he had one kidney removed as a result of renal cancer.

In 2014 he was diagnosed with Melanoma (but he forgot about it until the oncologist for his colon cancer spotted it on his abdomen).

By 2019 his entire abdomen was covered in thick blank melanoma. He had immunotherapy (every 3 weeks for 7 months) until the worst case scenario happened. The immune system started attacking his good organs (gallbladder and bile ducts). When he was admitted to hospital to get this taken care of they realized he had a blood infection. He was admitted for 30 days on IV antibiotics.

In 2019 he was diagnosed with Colon Cancer and had more than 50% of his colon removed.

This man has 4 primary cancers.

Today, Melanoma and Prostate cancer are both at the end stage. The Prostate cancer (they think - could be the melanoma (or both)) as of February 2022 was found in one pelvis bone. As of May 2022 it is now in both pelvic bones, ribs and skull.

For the past 18 months his oncologist has been treating the prostate cancer levels rising with chemo pills and injections. He gets degarelix 20 mg/mL chemo injection every 28 days. darolutamide 300 mg tablet x 4 a day. Today, the doctor said stop taking the Darolutamide as it is not working. His PSA since Jan, 2021:
48.30 H66.70 H66.20 H69.30 H94.40 H117.00 H125.00 H152.00 H167.00 H186.00 H181.00 H188.00 H279.00 (the last result was on Friday).

This next steps the doctor wants to do are:

Prostate cancer:
This is now getting worse gradually
Continue your hormone injections monthly lifelong
Stop your darolutamide (Nubeqa) since it is no longer working
We will start intravenous zoledronic acid, initially once monthly, to protect your bones
It is important to continue vitamin D 1000 units daily and calcium [1 Tums twice daily]
Is important not to have dental work especially extractions, root canals or implants
We will need updated CT scan as soon as possible to guide decisions about further treatment

Melanoma
This is now getting worse across her abdominal wall
Previously, your immune therapy cause difficult side effects
We will need results of your CT scan to guide next steps
We will meet again after your CT to discuss other treatment options

Your other kidney cancer and colon cancer do not seem to be causing problems.

I have taken my dad to every single appointment over the last 4.5 years. I have sat with in the ER many, many times, I have literally picked him up off the ground passed out and called 911. On top of this I visited my Mom every single day in palliative care from June-November 2021 until she passed away from metastatic lung cancer.

In total Dad has 8 illnesses (including the cancers) he has a 5 cm aortic aneurysm and had a stroke in 2018.

Today, I decided that I am not taking him to anymore treatments and called his social worker to arrange getting him there. He has degenerative disk disease and really bad arthritis and gets around in a wheelchair as he can't walk far.

It’s so very difficult for me, I am tired, I am on blood pressure meds from all the anxiety (my blood pressure skyrocketed) and I have a mamogram on Wednesday as my Dr found a lump. After my mamo, Dad has a brain scan which I have to take him too.

I guess I am posting this to see what others think and what options you may consider if you were in my Dad’s shoes.

Also, his Melanoma was confirmed by Veterans Affairs that it’s related to his service of 35 years in the Air Force. They won’t help with anything, they give money - that’s it.

I firmly believe that the oncologist and hospital are using him as a guinea pig. The oncologist says every time, I am trying to keep you alive as long as I can.

Thank you for your support,
Frances

  1. Hi
    I'm very very sorry to hear this. Apparently, a lot of the cancer appearing in your dad has to do with genetics and the stressors he's been through.
    I want you to know it is okay to be tired. It is okay to feel like you both need to stop, and what with the lump in your breast maybe it is time to focus a bit more on yourself.
    I suggest you try to see a palliative care specialist. If you feel like this is too much, and you would rather he spend his last few years chilling at home then that is completely fine, a palliative care specialist should be able to tell you whether this is a viable option or not, and how to make it happen.
    Also, as a student in the healthcare sector, I want you to know that no sane doctor would want their patient or their caregivers to feel that they are guinea pigs. It may very likely feel that way, because cases such as your fathers' are extremely rare, so doctors are treating him in the best way they could, but there is only so much that they know about how to handle such a complex case, and there is only so much they can do to ease his pain and yours.
    Textbook cases sound much easier and nicer, and they will feel well taken care of (assuming a good healthcare system is already established), but in cases like your father's, there is so much that they don't know, and they, therefore, have to try in their best knowledge. I am truly sorry you feel this way. I hope your affair is eased and your father's pain passes soon.


    God bless.

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