Have any questions about how to use the community? Check out the Help Discussion.

Immunotherapy

Hope5757
Hope5757 Member Posts: 150
100 Comments 25 Likes 25 Care Reactions 5 Insightfuls Reactions
Member

Could you please provide any experiences (personal or 3rd party) of immunotherapy treatment and impact on middle mixed (vascular/alzheimers) dementia?

MIL is 91 with very slow growing malignant lung cancer. She has 3B kidney disease and dry macular degeneration. There are some other old age issues but those are the primary medical concerns.

Oncologist says we’re at the point where another round of immunotherapy treatment was indicated. He would also support a watch and wait decision.

Thank you

Comments

  • Marta
    Marta Member Posts: 694
    Legacy Membership 500 Comments 100 Likes 25 Care Reactions
    Member

    What kind of immunotherapy?

  • Hope5757
    Hope5757 Member Posts: 150
    100 Comments 25 Likes 25 Care Reactions 5 Insightfuls Reactions
    Member

    Keytruda most likely. We haven’t scheduled yet but that was the oncologist’s inclination at our least meeting.

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Hi Hope. I doubt that there's much data on this, especially in the extreme elderly. By immunotherapy do you mean a PDL1 inhibitor like Keytruda? These can have other side effects besides dementia, as I am sure you know.

    If it were my loved one, i would opt for no treatment except for comfort. My partner has a lymphoma which we will not treat, she wouldn't understand.

  • Hope5757
    Hope5757 Member Posts: 150
    100 Comments 25 Likes 25 Care Reactions 5 Insightfuls Reactions
    Member

    Thank you M1. Yes, Keyruda. Oncologist provided the side effect information and of course at MIL’s age, it’s frightening.

  • M1
    M1 Member Posts: 6,788
    1,500 Care Reactions 1,500 Likes 5000 Comments 1,000 Insightfuls Reactions
    Member

    Again it's hard to comment from the sidelines in a situation like this, but my own choice would be for comfort care. I think the oncologists feel obligated to lay out the options without prejudice, but that doesn't help you very much if it puts the burden of the decision on you. You might ask him/her what they would do for their own parent, sometimes that can spark an enlightening discussion. Just another thought that you might want to involve hospice sooner rather than later; most people wait far too long.

  • Marta
    Marta Member Posts: 694
    Legacy Membership 500 Comments 100 Likes 25 Care Reactions
    Member

    Hope: I’m sorry you are facing such a decision. I’m not sure that the main concern should be the effect of Keytruda on cognition. These have not been well studied as yet, and the effects of other therapies on cognition ( chemo, radiation) are difficult to parse out.

    Keytruda can attack about any organ in the body and effects can be horrendous. Of course, this must be weighed against the ultimate outcome: death from lung cancer.

    what would your Mom have wanted prior to dementia? Does she have an advance directive?

    I recommend reading: Being Mortal by Atul Gawande.

    Best to you.

  • terei
    terei Member Posts: 598
    Seventh Anniversary 500 Comments 100 Insightfuls Reactions 100 Likes
    Member

    I second reading Being Mortal.

  • Hope5757
    Hope5757 Member Posts: 150
    100 Comments 25 Likes 25 Care Reactions 5 Insightfuls Reactions
    Member

    Our routine scan to monitor MIL’s lung cancer ran very long due to difficulties in drawing blood. So, we’ve had to reschedule the follow up with the lung specialist until next month which postpones the immunotherapy decision.

    For anyone facing a similar decision, “Immunotherapy in Older Adults: A Checkpoint to Palliation?” by Rawls Elias, MD and Oreofe Odejide, MD) is very informative.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more