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Old 01-16-2020, 10:31 AM
 
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A friend is undergoing this. His situation seems quite dire, and I'm wondering if it actually does any good or if this is just a make-money, keep-hope-alive gimmick -- the latest in a long line of them in treating cancer? Something with "no side effects" doesn't seem as if it would be very effective. Also, since it involves weekly IV infusions (as well as a long, tiring drive for the patient), why don't they insert a port to save his veins?
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Old 01-16-2020, 01:32 PM
 
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Immunotherapy is a big advance and, for patients who have a cancer responsive to it, is far superior to chemotherapy or radiation. The idea, of course, is to trigger the body's own immune system to target the cancer cells specifically rather than killing off healthy cells as well.

So far, immunotherapy is only tested and proven to be effective for a few types of cancer. Treatment for melanoma is one of the most effective. We would need to know what type of cancer your friend has and what studies have been done on the effectiveness of immunotherapy for that condition, to judge whether it will do any good or not. Also, as with most treatments, some patients respond well and others do not.

If your friend needs a long series of weekly infusions, I also have no idea why a port wasn't inserted. Did you ask him?
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Old 01-16-2020, 03:28 PM
 
Location: on the wind
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Originally Posted by saibot View Post
Immunotherapy is a big advance and, for patients who have a cancer responsive to it, is far superior to chemotherapy or radiation. The idea, of course, is to trigger the body's own immune system to target the cancer cells specifically rather than killing off healthy cells as well.

So far, immunotherapy is only tested and proven to be effective for a few types of cancer. Treatment for melanoma is one of the most effective. We would need to know what type of cancer your friend has and what studies have been done on the effectiveness of immunotherapy for that condition, to judge whether it will do any good or not. Also, as with most treatments, some patients respond well and others do not.

If your friend needs a long series of weekly infusions, I also have no idea why a port wasn't inserted. Did you ask him?
Really good reply. As for not having a port, how many infusions were planned initially? It could be they were waiting to see how well he responded before continuing therapy. If he was tolerating it well and they decided to continue longer term, placing a port would make sense. Agree...you'd need to ask him.
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Old 01-16-2020, 03:35 PM
 
Location: Omaha, Nebraska
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Originally Posted by otterhere View Post
Something with "no side effects" doesn't seem as if it would be very effective.
Immunotherapy definitely can have side effects, some very serious and a few that are potentially life-threatening. But many people tolerate it well, and it can be extremely effective with some cancers (particularly melanoma and some non-small cell lung cancers).
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Old 01-16-2020, 06:03 PM
 
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I think it is misleading to say that immunotherapy is effective for certain types of cancer. The truth is more complicated. It is more like immunotherapy is very effective for a certain subset of the patient population who have certain types of cancers. In the case of NSCLC (which I have), the response rate for PD-1 blockade immunotherapies is typically somewhere between 15 and 30% (whereas the response rate for chemoradiation in NSCLC is 82%). That means that immunotherapy is not effective (or not that effective) for the majority of patients with NSCLC (both adenocarcinoma and squamous cell). Of course, when immunotherapy is effective, it can be extremely effective.

Also, although in general immunotherapy is associated with less severe side effects (one of my oncologists told me that 90% of patients had only mild to very mild side effects), the problem is that the 10% who do have side effects tend to have more severe side effects that those on chemo, some even fatal or life-threatening. Of course, chemo can also do you in, but oncologists are much better at predicting who is going to have severe side effects (typically the more frail, those with many co-morbidities) and taking necessary precautions like starting with a lower dose. They are finding it very hard to predict who is going to have a severe reaction on immunotherapy or when they are going to have this reaction (someone can be on immunotherapy for months with no problem, but then out of the blue have a sudden onset severe immune-related adverse effect).

As you might imagine, research is being done on both these issues — better understanding and predicting the harms and benefits of various immunotherapies.

The most important thing in your friend’s case is figuring out if the immunotherapy is actually effective and if he is being well monitored for side effects by his team. However, this is undoubtedly not really any of (or much of) your business and best left to your friend to work out with his medical team.

Last edited by Jill_Schramm; 01-16-2020 at 06:14 PM..
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Old 01-17-2020, 09:02 AM
 
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Originally Posted by Parnassia View Post
Really good reply. As for not having a port, how many infusions were planned initially? It could be they were waiting to see how well he responded before continuing therapy. If he was tolerating it well and they decided to continue longer term, placing a port would make sense. Agree...you'd need to ask him.
This has been going on for quite some time; I would say a year of weekly infusions in another city interrupted by stays in the hospital for various surgeries, etc. He has metastatic cancer (not sure of original location): kidneys, brain, lungs. Just seems to me like a "Hail Mary" pass -- or a racket -- yet he's either being told or has decided for himself that it is effective and will ultimately cure him. I can't see that it's doing any good (of course I don't say so) and wondered if it ever does or it's just the latest gimmick in the war on cancer.

I asked him about the port, but he never responded (he's not one to question doctors).
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Old 01-17-2020, 11:49 AM
 
Location: Omaha, Nebraska
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Originally Posted by otterhere View Post
He has metastatic cancer (not sure of original location): kidneys, brain, lungs. Just seems to me like a "Hail Mary" pass -- or a racket -- yet he's either being told or has decided for himself that it is effective and will ultimately cure him. I can't see that it's doing any good...
Without knowing exactly what type of cancer your friend has, there's no way for you to know how much the immunotherapy is helping him. It may have prolonged his life significantly, or it may have had more modest results. The only thing you can conclude is that your friend and his oncologist both feel he's obtaining some benefit from the drug.
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Old 01-17-2020, 12:38 PM
 
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Originally Posted by Aredhel View Post
Without knowing exactly what type of cancer your friend has, there's no way for you to know how much the immunotherapy is helping him. It may have prolonged his life significantly, or it may have had more modest results. The only thing you can conclude is that your friend and his oncologist both feel he's obtaining some benefit from the drug.
And don't forget that if the friend even only feels he is getting some benefit, that has some value as well. When people find out they have metastatic, almost certainly terminal cancer, they respond differently.

Some don't want to pursue any further treatment from that point on.

Many will try a few things, but if they're not working or the side effects are too severe, they stop.

And some will persist in doing whatever can possibly be done up to the very end. My father-in-law (pancreatic cancer) was one of these. The whole family knew that he was terminal and declining very rapidly. We wished he could come to terms with that and spend his last few weeks in some sort of peace. But no, he was convinced he was going to survive and was absolutely determined to continue with chemo and a series of alternative treatments as well. There was nothing we could do! It was his nature to fight, and he kept fighting until the last chemo combined with ascites (fluid buildup in the abdomen) sent him to the ER and then on life support in the ICU where he died a couple of days later.

I think about how he died, and it seems too bad to me. No one in the family got to say good-bye, because there was never a moment when he stopped treatment and accepted that he was going to die. He never seemed to be ready to go and so his death was hard on us. But on the other hand, his will to fight kept him going for a pretty good long time (19 months is a long time to have pancreatic cancer), and anything else would have been contrary to his nature; it just wouldn't have been "him" to give up.

It sounds like the OP's friend is this way. You can call his treatment a racket or a gimmick or whatever, but the truth is that some people will NOT accept being told "there is nothing more we can do." As far as they are concerned, there is something they can try, and they want to try it.
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Old 01-17-2020, 12:43 PM
 
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Originally Posted by saibot View Post
And don't forget that if the friend even only feels he is getting some benefit, that has some value as well. When people find out they have metastatic, almost certainly terminal cancer, they respond differently.

Some don't want to pursue any further treatment from that point on.

Many will try a few things, but if they're not working or the side effects are too severe, they stop.

And some will persist in doing whatever can possibly be done up to the very end. My father-in-law (pancreatic cancer) was one of these. The whole family knew that he was terminal and declining very rapidly. We wished he could come to terms with that and spend his last few weeks in some sort of peace. But no, he was convinced he was going to survive and was absolutely determined to continue with chemo and a series of alternative treatments as well. There was nothing we could do! It was his nature to fight, and he kept fighting until the last chemo combined with ascites (fluid buildup in the abdomen) sent him to the ER and then on life support in the ICU where he died a couple of days later.

I think about how he died, and it seems too bad to me. No one in the family got to say good-bye, because there was never a moment when he stopped treatment and accepted that he was going to die. He never seemed to be ready to go and so his death was hard on us. But on the other hand, his will to fight kept him going for a pretty good long time (19 months is a long time to have pancreatic cancer), and anything else would have been contrary to his nature; it just wouldn't have been "him" to give up.

It sounds like the OP's friend is this way. You can call his treatment a racket or a gimmick or whatever, but the truth is that some people will NOT accept being told "there is nothing more we can do." As far as they are concerned, there is something they can try, and they want to try it.
Well, that's what I'm getting at. I don't (personally) feel it's particularly ethical to practice "the placebo effect" to give patients hope where there is none; it robs them of the opportunity to come to terms with their mortality and prepare accordingly -- and also wastes bazillions of health care dollars. But YMMV. I just wondered if it this therapy was considered generally worth the while or was effective.
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Old 01-17-2020, 12:51 PM
 
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Originally Posted by otterhere View Post
Well, that's what I'm getting at. I don't (personally) feel it's particularly ethical to practice "the placebo effect" to give patients hope where there is none; it robs them of the opportunity to come to terms with their mortality and prepare accordingly -- and also wastes bazillions of health care dollars. But YMMV. I just wondered if it this therapy was considered generally worth the while or was effective.
But you're missing the point that doctors can look straight at a patient and say, "There is nothing more we can do for you; you have about a month" and some patients will STILL not accept that but go searching for more treatment, often in alternative medicine. You can't force someone to "come to terms with their mortality."

As for wasting healthcare dollars...if it's truly an alternative/experimental treatment, as you suggest your friend's immunotherapy is, it's not paid for by insurance. It comes out of the patient's pocket. My father-in-law spent something like $12,000 on alternative treatments during his last two months. A racket? Maybe. But it's a racket that HE wanted and went searching for and was willing to pay for.
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