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Immunotherapy not working, chemo + metastasis


unknown00

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Hi there,

As I said in another topic, my dad has NSCLC adenocarcinoma. 3-4 months ago when he was first diagnosed he was relatively "Well". He was active, doing everyday stuff. He only had cough and he ran out of breath easily. One of the biomarkers during testing came out high so he was given the option of immunotherapy (Keytruda). 3 months later, tests revealed that not only his lung got much worsen but there was a strong indication of brain metastasis.

Long story short, now he started Pemetrexed + Carboplatin chemo and he has brain metastasis with edema. He can barely move and he is very very weak, lost so much weight.

When I initially joined this forum I got hope through the various posts I read by people who gave their honest feedback and who really wanted to help. Unfortunately as the time goes by (very quickly..) I am facing the harsh reality. I lost hope and I don't how this can turn around in any way.

His health declined extremely rapidly, I wasn't expecting that. Not only that, I had in mind that he would do his treatment and just deal with some side effects. Unfortunately every single day there is something new, something bad, something unexpected that is dragging us down.

Sorry for the sad and pessimistic tone of my message but that's how I feel.

Another subject I would like to touch is "protocols". They keep mentioning that they're following protocols, and they do. However I feel like "protocols" are vary general and for sure, even statistically, will provide bad treatments to patients that will eventually cost their life. I don't blame the doctors or the "system" but it's something that I've been thinking about lately. They don't really study each case individually even though they claim that they have a board of doctors. Yes there is a board, but what do they actually do? For the most part they follow the bibliography blindly. Anyway..

Thanks for your time and may you have a great day

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I'm so sorry your Dad isn't responding to the treatments he's had. Unfortunately, that's the reality for many people, still, with this disease. The outlook is undeniably improving, but that's cold comfort when it's you or your loved one suffering.

Have you consulted with a radiation oncologist? That's typically what is done for brain mets, since most medications don't cross the blood-brain barrier.

And the "protocols" typically represent the approved treatments that have been shown to help the most people. You're right--they don't work for everyone. Clinical trials sometimes offer alternatives. I'm not sure what trials might be available where you live, or whether your dad would be a suitable candidate, given his current health issues.

As far as the multidisciplinary boards go, patients do benefit overall by having a team of specialists review their cases. Unfortunately, the science hasn't yet advanced to the point where it's possible to predict with any certainty which patients--even those with the same type and stage of cancer and other characteristics in common--will respond to which treatments. There's still a long way to go.

It's very hard to watch a parent suffer--I lost my mom to metastatic breast cancer 30-some years ago and it was very distressing for all of us. 

I hope you are able to get a palliative care practitioner to help ensure your Dad is comfortable, whatever comes.

 

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1 hour ago, LexieCat said:

I'm so sorry your Dad isn't responding to the treatments he's had. Unfortunately, that's the reality for many people, still, with this disease. The outlook is undeniably improving, but that's cold comfort when it's you or your loved one suffering.

Have you consulted with a radiation oncologist? That's typically what is done for brain mets, since most medications don't cross the blood-brain barrier.

And the "protocols" typically represent the approved treatments that have been shown to help the most people. You're right--they don't work for everyone. Clinical trials sometimes offer alternatives. I'm not sure what trials might be available where you live, or whether your dad would be a suitable candidate, given his current health issues.

As far as the multidisciplinary boards go, patients do benefit overall by having a team of specialists review their cases. Unfortunately, the science hasn't yet advanced to the point where it's possible to predict with any certainty which patients--even those with the same type and stage of cancer and other characteristics in common--will respond to which treatments. There's still a long way to go.

It's very hard to watch a parent suffer--I lost my mom to metastatic breast cancer 30-some years ago and it was very distressing for all of us. 

I hope you are able to get a palliative care practitioner to help ensure your Dad is comfortable, whatever comes.

 

Thanks for your reply and your words, you've been as always helpful. I'm sorry for your mom, it must have been difficult. It is extremely distressing indeed..

We haven't yet consulted a radiation oncologist as this is a very recent development but we have an appointment tomorrow with the oncologist who I assume will refer us to one.

By the way either I misunderstood the purpose of these treatments or the doctor hasn't been transparent. Up until very recently I was under the impression that immunotherapy as well as the recent chemo were supposed to stop the cancer growth and potentially start shrinking it. To my understanding that would mean (in case it worked of course) that the patient would essentially be treated (for x amount of time, it doesn't matter). I don't know if am getting this wrong but now I believe that even if the chemo works (and even if radiation works) it would still not make any difference? It will just slow down cancer's progress, not stop it or "cure" it. If that is true then each day, which is the worse so far, it's at the same time the best compared to what's next, meaning it reached a point of "no return". I'm really confused and I shouldn't be because doctors should have been transparent with us of what's coming or what's happening. Not asking them to be prophets or guess the outcome, just some realistic expectations and transparency when it comes to what each treatment is supposed to help with and what's its purpose. Is chemo's purpose to prolong his life for 2-3 more months or to shrink/stop it? Or is it that the target is always the latter but more often than not the outcome is the former?

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Actually, with treatment, anything can happen. Cancer does sometimes change and mutate so as to escape the treatment--patients can develop "resistance" to therapy that initially worked. Example: I initially had a terrific response to chemo/immunotherapy (Carboplatin, Alimta, Keytruda). But after the four-treatment course, and switching to "maintenance" therapy, my cancer started to grow again. At that point, I either could have gone with more standard chemo, or a clinical trial. The trial I opted for at least holds out the hope of a cure--so far, I've had good results and I'm hopeful.

And there are people like Tom Galli, who went through a number of different treatments before finally having his cancer disappear. After 15+ years, his doctors have pronounced him "cured." And there are others here whose cancer has ultimately been dormant/gone for several years.

So the thing is, with the kind of cancer your dad has, apparently the doctors expected a better response--and I'm sure they are disappointed he hasn't responded.

Cancer is a very tricky disease. Every cancer is different; every patient is different. Doctors try whatever they think is most likely to work, but there are no guarantees. It's unfortunate you didn't have the uncertainties explained to you more clearly, but most of us here think it's worth trying treatments--even several different treatments--until it becomes clear the treatment is causing more suffering than the disease. Some of us finally get the cancer controlled after severe different lines of treatment.

I hope your dad's doctor has some ideas. Do ask about any clinical trials for which he might be eligible.

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I'm so sorry to hear this. I pray that there's still hope for your dad. Perhaps you could get a second opinion from a different oncologist. You could also ask the oncologist if there are any clinical trials. Clinical trials have saved many people who were running out of treatment options.

Don't give up hope yet. Treatment can be like trial and error. One treatment might work for one person but not for another. Hopefully there are different treatment options.

I don't want to give false hope but sometimes the cancer can appear to get worse (its called pseudo progression) but actually it's not and is inflammation caused by immunotherapy. It happened to my mum. They made a mistake and said that the cancer came back but it was actually inflammation from the immunotherapy.

Don't lose hope. Try to get a different opinion, I hear in the US it's very common and easy to switch doctors not like the UK where I'm from.

Wishing strength to you and your dad 

Monica x 

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unknown,

"Is chemo's purpose to prolong his life for 2-3 more months or to shrink/stop it?" Yes to both. "Or is it that the target is always the latter but more often than not the outcome is the former?" I would say yes except the introduction of immunotherapy has resulted in dramatic increases in shrink/stop and NED (no evidence of disease) results.

I had five failed treatments before a precision radiation treatment turned around my outcome. Diagnosed in February 2004 and was in continuous treatment till March 2007. I've been scanned for recurrence since; my most current scan was yesterday and I'm still sweating out the results.

One should never lose hope. Have you seen the movie The Shawshank Redemption. Here is my take on how the movie characterizes hope. Your dad is in treatment. How long will these treatments last, I cannot say. But, I can say with conviction, your dad is living and everything you can do to allow him to enjoy the life extension that treatment allows is a good thing!

Lung cancer clinical trials do offer access to unique treatments beyond the standard of care. You might press your dad's physicians on this point during the next consultation. Oh by the way, Lexie's suggestion about a radiation oncologist consultation is one I truly endorse. This discipline's unique skill set and approach is what saved my life when chemotherapy failed.

Stay the course.

Tom

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