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My husband has Alzheimer's with Lewy body dementia. He also has cancer. He is unable to have surgery or chemotherapy. He had radiation, but it didn't work. He is now on immunotherapy. Two weeks after starting immunotherapy, he got much worse cognitively. He has been tested for everything from UTIs to CAT scan of the brain. His doctor said this is not from Alzheimer's or Lewy body; he is in full delusion. I suspect the immunotherapy since one of the side effects is confusion. Does this go away after immunotherapy?

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I've had 2 double rounds of immunotherapy (Yervoy and Opdivo) for stage 4 cancer. After the 2nd infusion, I had a toxic reaction that is still ongoing 10 months later, with horrible vertigo and hearing loss with loud ringing in my ears. I was bedbound for MONTHS and am just now getting out a bit, pushing past the dizziness.

Immunotherapy is the wild west of cancer treatment, only in use for the past 10 years or so. Since the meds activate our own immune system to kill off the cancer, there is no telling WHAT will happen as far as side effects go, only that they WILL happen to everyone. How severe they will be is anyone's guess. I have been hospitalized twice and seen by top neurologists and oncologists who cannot tell me IF or WHEN this toxic reaction will go away. It may not. But I'm in remission for now. Melanoma is very aggressive and terminal, so it will return, it's a matter of when, not if.

Your husband Jim has Alzheimer's disease with LBD, one of the worst forms of dementia. Now he's got cancer at 83. Why is he being put through immunotherapy at this stage of life, with a terminal and horrible disease like AD at play? I'm 66 and cannot undergo ANY MORE immunotherapy due to the serious audiovestibular toxicity reaction I've had. I've accepted I'm terminal and when the cancer comes back, I'll die. That's ok, it's life on life's terms. My mother had advanced dementia and the last thing I'd have agreed to was any cancer treatments to extend her life. In fact, I prayed to God daily to please take her.

Please consider carefully about continuing with immunotherapy for Jim. The doctors can NEVER tell you all the horrible side effects that can ensue from it. Leave him alone in peace to live what's left of his life in peace and comfort, calling in hospice when the time is right. That is my plan for myself, with my husband's approval, and no more voodoo medicine for me. All it was buying me was TIME anyway, and now there's no QUALITY left to that time. Ironic, isn't it.

Good luck and God bless you both.
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sp196902 Dec 17, 2023
I agree Lea. I don't understand putting someone with lewy body through cancer treatment but this is the world we live in now where quantity of life supersedes quality of life. It's insane. Just because you can doesn't mean you should.
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I'm so sorry that your husband has all these health issues going on. The fact that the life expectancy for someone with Lewy Body dementia is only 5-7 years, I guess I'm just not understanding why you and his doctors would choose to try and treat his cancer knowing that he's going to die anyway.
Perhaps his doctors didn't tell you the life expectancy of someone with Lewy Body's and if that's the case I'm sorry, they should have. But they should know better than to try and treat someone who is already dying. There's something just so wrong with that.
At this point I would think that you'd want more quality time with your husband over the quantity of time, and that may just look like stopping all further treatments and bringing hospice on board if his cancer is also terminal.
I know that's probably not what you're wanting to hear, but it's probably what's best.
I'm praying that God gives you great wisdom and discernment in this very difficult situation.

And I guess to answer your question, I have a dear friend who has liver cancer and she's had 2 immunotherapies so far with no complications other than being tired. I'm sure everyone is different, as you can see in lealonnie1's response below.
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lealonnie1 Dec 17, 2023
Unfortunately, side effects from immunotherapy can happen a year after a treatment, or even later, not to mention most people are scheduled for 2 years of infusions, depending on the type of cancer and the stage. 6 months after my last infusion I developed an eye inflammation in the irises of both eyes that refuses to clear up. The immune system stays ramped up for a very long time after its turned up by the drugs, and there's no way to turn it OFF; that's the issue. I pray your friend continues with no side effects.
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Is he in the hospital, because hospital induced delirium and psychosis is also commonly "a thing".
As to whether these things will go away when returned to normal environment, that is seldom know.
Also, I know you likely already know that Lewy's especially has marked increase in delusions and hallucinations with ANY stress both of illness and change of environment.

You best answers as to what the prognosis in any of this is will be your medical team as they best know all the facts in your dear one's case.
I wish you the best. I suspect you already have all the information you can know.

I hope, given the quality of life your hubby is enduring, that if you are his POA and would know his wishes you don't put him through an awful lot, if that would not have been his wish. Treatments can greatly add to the misery of cancer if they are not curative.
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A friends husband has Parkinson's and LBD he had a few rounds of Keytruda and the Parkinson's seemed to get worse as did his LBD
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