1. < Lung Cancer

Started immunotherapy maintenance: What side effects can I expect?

Posted by Tom Anderson @ta52, Jan 26, 2021

Just had my first immunotherapy maintenance session late yesterday afternoon with Keytruda and Alimta only. Also had an injection of Zofram for anti-nausea. So far, no side effects. What have been some other experiences with side effects after maintenance? I had minimal side effects after the first four regular infusions so is maintenance even less harsh?

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dutchw | @dutchw | Jan 27, 2021
In reply to @cindylb "That is a great question and one we were exploring for my husband but alas, the..." + (show)
@cindylb

That is a great question and one we were exploring for my husband but alas, the Alimpta (Chemo) and Keytruda (immunotherapy) didn't work over the 12 weeks and now we're on the path to discover which thing caused his Atrial Fibrilation of the heart (chemo? radiation? Keytruda?). It's an important question because his options are now just radiation and chemo (no immunotherapy), as it didn't work. Immunotherapy ramps up your own immune system to kill the cancer cells and it's a blessing to so many. In my husband's case, they really aren't sure and have never been sure what type of cancer he has. No biopsy showed the cancer type conclusively so they had to 'guess' it was lung finally when it spread to his bones. It might not react to the Keytruda because he didn't have much PDL1 in the biopsy tissue, which is what Keytruda needs to work. Instead of killing cancer, I guess the Keytruda got bored and decided to attack his heart.....which immunotherapy can do - attack your own organs, although that is rare. Hugs to all and glad to hear this protocol is working for some...that's good news. We're still on the path to figuring out what might help my husband.
Hugs

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Wow, thank you for the eye opener Cindy. I was lucky to have a PDL of 90. Your and your husband sound like fighters, your winners so hang in there. Never give up.

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1 reply
dutchw | @dutchw | Jan 27, 2021
In reply to @ta52 "On Labor Day 2020 I was diagnosed with stage III NSCLC that had metastasized into my..." + (show)
@ta52

On Labor Day 2020 I was diagnosed with stage III NSCLC that had metastasized into my lymph nodes. My CTs and PETs last week showed tumor reduction by between 75-85% and that was after only four infusions of Ketruda/Alimta/Carboplatin. I feel the same way, Dutch, and it's too bad so many people are unaware of the positive side of immunotherapy. It is working for me, I'm not there yet but I sure am headed in a positive direction.

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That is such good news, makes me smile. Keep that positive attitude, it gives us all encouragement.

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cindylb | @cindylb | Jan 27, 2021
In reply to @dutchw "Wow, thank you for the eye opener Cindy. I was lucky to have a PDL of..." + (show)
@dutchw

Wow, thank you for the eye opener Cindy. I was lucky to have a PDL of 90. Your and your husband sound like fighters, your winners so hang in there. Never give up.

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@ettadutch That is a high PDL which means the Keytruda is most likely to work. My husbands was a 1...yup, we're grasping at straws over here but it was worth a try. Luckily we have a very good oncologist who is trying to figure it out and my husband is a trooper but he's getting weary and beaten up now. Hugs.......keep fighting!!

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2 replies
Tom Anderson | @ta52 | Jan 27, 2021
In reply to @cindylb "@ettadutch That is a high PDL which means the Keytruda is most likely to work. My..." + (show)
@cindylb

@ettadutch That is a high PDL which means the Keytruda is most likely to work. My husbands was a 1...yup, we're grasping at straws over here but it was worth a try. Luckily we have a very good oncologist who is trying to figure it out and my husband is a trooper but he's getting weary and beaten up now. Hugs.......keep fighting!!

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I had heard they only try Keytruda if the PD-L1 level is greater than 50%. Is that not true?

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Tom Anderson | @ta52 | Jan 27, 2021
In reply to @dutchw "You’re absolutely right, laughter is a wonderful medicine!!! A friend of ours made me a dumb..." + (show)
@dutchw

You’re absolutely right, laughter is a wonderful medicine!!! A friend of ours made me a dumb looking head band out of styrofoam and string with my name and date of birth on it. I wore it into the infusion room and just pointed at my forehead, whole room cracked up...

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My birthday was earlier this month and I didn't get a single birthday card. Everyone asks but no card. I've started telling replying that I'll tell you mine if you tell me yours.

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Tom Anderson | @ta52 | Jan 27, 2021
In reply to @cindylb "@tats Feel positive and enjoy any and all gains you make against cancer and try not..." + (show)
@cindylb

@tats Feel positive and enjoy any and all gains you make against cancer and try not to have survivors guilt.....because as long as there are people who ARE getting better, there's always hope for even the sickest now and in the future. After all, I'm a breast cancer survivor (so far) and if I hadn't lived there would be no one to care for my husband now. What we need is more survivors.....we can't let cancer win this thing. You are a kind person. Hugs and good luck.

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You're right. We need to get beyond that cancer is an automatic death wish mentality. There are so many survivors but there are never enough.

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cindylb | @cindylb | Jan 27, 2021
In reply to @ta52 "I had heard they only try Keytruda if the PD-L1 level is greater than 50%. Is..." + (show)
@ta52

I had heard they only try Keytruda if the PD-L1 level is greater than 50%. Is that not true?

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@tats That is generally true, only with a higher PDL1 but as I said, they are grasping at straws and were using a very standard protocol to see if it would work. The Carboplatin, Alimpta, Keytruda mix worked but once the big dog on the block (Carboplatin) left the mix, it stopped working, so the Keytruda really wasn't effective because he had so little PDL1.

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dutchw | @dutchw | Jan 27, 2021
In reply to @ta52 "My birthday was earlier this month and I didn't get a single birthday card. Everyone asks..." + (show)
@ta52

My birthday was earlier this month and I didn't get a single birthday card. Everyone asks but no card. I've started telling replying that I'll tell you mine if you tell me yours.

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About the same here. The internet seems to have taken over, texting a BDay wish vs. a card as in the ole days.

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dutchw | @dutchw | Feb 5, 2021
In reply to @cindylb "@ettadutch That is a high PDL which means the Keytruda is most likely to work. My..." + (show)
@cindylb

@ettadutch That is a high PDL which means the Keytruda is most likely to work. My husbands was a 1...yup, we're grasping at straws over here but it was worth a try. Luckily we have a very good oncologist who is trying to figure it out and my husband is a trooper but he's getting weary and beaten up now. Hugs.......keep fighting!!

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Cindy.. Sorry for not getting back sooner.. Yeah, I know how your husband feels but don’t let him give up. There was a time during chemo I couldn’t even dress or bath myself and had it not been for my wife I don’t know what I would have done. You are very important to your husbands wellness. If nothing else, this disease has given me a much greater appreciation of my wife and her feelings and fears. I’m sure your husband feels the same, so you hang in there too !! never give up..

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lisakuehl | @lisakuehl | Feb 5, 2021
In reply to @merpreb "@lisakuehl- I am truly sorry for the loss of your husband. Losing a spouse is so..." + (show)
@merpreb

@lisakuehl- I am truly sorry for the loss of your husband. Losing a spouse is so difficult by itself, please don't beat yourself up about his treatments, or his decision to have them. After we are given a diagnosis of cancer, and one of the most difficult things to deal with is the loss of control of our lives. It's all up to trusting the medical field and at the mercy of Insurance companies. However, doctors can't read into the future. Also, there are no miracle drugs or drugs that work the same way for everyone. Doctors may not tell everyone all of the possibilities of certain drugs and their effects because that would be impossible. Also, there is one thing that no one can take away from us and that is hope. Any second-guessing this by his medical team would have been immoral.

Side-effects from treatments are often difficult and some have to be stopped. One of my doctors once said to me, "Chemical intervention is the ultimate blunt instrument", Medications have different effects, beyond their intended use, upon different people, then you can possibly predict. Normal biomolecules in normal biological systems have multiple uses and multiple effects."

Again I am very sorry for your loss. Following our doctor's recommendations is always recommended but the outcome of any cancer is always a guess, as are the treatments. All of the decisions that you and your husband made were together. Please don't carry this on your shoulders. Sometimes all we have is hope and for some of us, it is sustaining.

I hope that the memories of your time with your husband have sustained you and gone beyond his cancer.

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Thank you for your kind and comforting words.

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