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Hi,

My FIL has Stage IV cancer, and it's terminal. That said, his oncologist thinks that he's a candidate for immunotherapy, to try to give him some symptom relief, and perhaps give him a few more months, or up to a year. That said, I've researched this drug (Atezolizumab), and the side effects seem extensive! Dad is already very weak, he's lost a lot of weight in the last few months (to the point where his radiation doctor said to just give him any calories we can, doesn't matter if it's super healthy food or not), and he has dementia, among other issues. The oncologist said that he thinks the benefits of immunotherapy outweigh the risks, but he also admitted that some of his patients died just from the immunotherapy!

My husband and I aren't sure what to do here. Yes, we would absolutely love it if the immunotherapy helped Dad feel a little better, even if it's just short term! But, I also don't want him to have miserable side effects, either. He had bad side effects just from 5 days of minimal radiation! And, apparently this immunotherapy only works in 20% of patients. Those aren't good odds, IMHO.

Thoughts, anyone? And to be clear, I'm not asking people to decide this for us, I wouldn't put that pressure on someone else! I'm just wondering what other people's experiences are, with immunotherapy. Thanks for any input!

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Um, immunotherapy is brutal on people that started out with an otherwise healthy body. Dementia? Not able to understand why he is having side effects from meds (and he will if he reacted to radiation)? 20% success rate? An oncologist is in the field of fighting cancer and trying to kill cancer cells. Fact: Not every doctor puts quality of life during the process ahead of "killing the enemy". I've been a Gilda's member, gone through surgery and radiation for my own cancers twice. My oncologist and my radiation oncologist have discussed immunotherapy if I ever have a another diagnosis or future metastasis. It's expensive. It doesn't always work. It's contraindicated with individuals that are not healthy starting out otherwise. It's difficult on the entire family and, by the way, it doesn't always work. A friend of mine opted for immuno once with lung cancer, and it worked for 2 months. Then the cancer came back when it quit working and side effects were so awful that when it quit, V went on hospice. Her husband D told me that he regretted the time they lost with family while she was unable to be around others with compromised immune system.
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"If he does try the immunotherapy, it would also be nice to have access to a medical person coming to the home, especially as we'll eventually approach winter and going out in winter can be brutal for people with compromised immune systems."

Don't ask me why, but I hadn't even thought of that yet! Ugh. It's been such nice weather still, and we're literally going one day at a time here. I'll look into the palliative care. Thank you again!
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I'd have a hard time making a decision as well, for myself, or for a loved one. But I probably would make a different decision today that I would have 15 years or so, before my sister endured the last uncomfortable months when cancer metastasized everywhere.

Knowing what I know now, I wish I had gotten hospice in sooner. As it was, it wasn't until a day or so before the end that they became involved.

Another thing you might want to consider is palliative care, a step away from hospice. My understanding first is that a lot of people, including medical people, are still figuring it out. Second, according to one of our very knowledgeable doctors, it's for chronic conditions, provides treatment as necessary, but doesn't take end of life actions.

It might help if he becomes less mobile, and it would offer a second or third set of eyes to monitor his condition. If he does try the immunotherapy, it would also be nice to have access to a medical person coming to the home, especially as we'll eventually approach winter and going out in winter can be brutal for people with compromised immune systems.
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Thank you, GardenArtist! I did check for Gilda's Club, but there aren't any in my area, unfortunately. I'll look into support groups at the hospital, though, for immunotherapy patients. I hadn't thought of that. I'd also never heard of CURE magazine, I'll look into that, too!

As for the decision, Dad can't make it at this point. We went round and round with him for days, he would say yes and no in the same sentence, and get really confused. He just can't comprehend at this point, unfortunately, so it's up to us to decide. But I asked my husband the same thing - do you think Dad WANTS to live an extra few months, just for our sake? I honestly don't think he does. But, my husband is having a hard time with that - I mean, it's his beloved Dad, you know? But I look at Dad, and see how tired he is, and that he's in pain sometimes (we do try to manage it, of course), and that he just doesn't feel good, and I don't think he wants to keep doing this for even longer. Honestly, I know I wouldn't. :(

What I'm worried about with the immunotherapy is that it might make him completely bedridden. He's close to that now, but he can still get up and move on his own. I think that if he has a bad reaction to immuno, and can no longer move around on his own, that this would be it for him, as far as being mobile, and he'd be in a bed for the remainder of his life. I don't want to see that. I'd rather see him up and about as long as possible!

Anyway, thanks again for your input, I'll look into the things you mentioned!

This forum has been awesome, I appreciate you all!!
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Many of my family members have had cancer; some survived it; some did not. I don't believe that any ever had immunotherapy.

Do you think that given the terminal Dx, and his current weakness and weight loss, that your FIL would want to prolong his life for a "few more months, or up to a year"?

You could try it but D/C it if the side effects are too great. That way you wouldn't feel as though you've precluded anything that might help.

But I think the issue also is if your FIL could handle whatever side effects might occur, or if his dementia would be complicated and more stress could occur.

Did some quick checking; you're right about the side effects. One that would worry me is the higher likelihood for infections. People in a terminal stage of cancer are already very vulnerable.

You might research Gilda's Club to see if there are any local chapters, either go to a meeting or contact them. Ours has specific support groups for specific cancers, but you could ask the staff (who probably know many of the patients) if there are any support groups for those in immunotherapy specifically. If there are, that will give you some patient input on their experiences. But everyone is different, so it's always hard to judge whether FIL might or not experience what someone else has.

Another source is the CURE magazine, which has excellent articles. Just did a quick check; there are a lot of articles for atezolizumab.

This is a tough decision, so give yourselves enough time to think it over. Is your FIL able to make a decision for himself, or would this be your decision?

And please be sure to take some time for relaxation so your minds can be clear when you make the decision.
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