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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Merry, Alumni Mentor | @merpreb | Jan 27, 2021
In reply to @dutchw "Yes it is Merry. My reaction was the same as yours at first but after my..." + (show)
@dutchw

Yes it is Merry. My reaction was the same as yours at first but after my wife, a retired RN, and I did a lot of research we decided to give it a try. At that point, what did I have to lose? 12 weeks later I was cancer free and Dr called me a miracle. Maybe it was the Keytruda, maybe it had nothing to do with fenbendazole, maybe a combination, all I can say is something worked for me, I’m grateful and believe I’m alive so I can share my story. I’ve had absolutely no side effects, well just one, tried scratching behind my ear with my foot and threw my back out . lol.

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@dutchw- Thank you for being so honest. There have been a lot of people, who have been given solemn news about their cancer journey, have tried alternate medications. And all of us have probably given it some thought, if...One of my favorite doctors did so for her husband. However, Mayo Clinic only supports evidence-based, science supported medical treatments for cancer.

One thing that bothers me is that you haven't told your doctor. Do you have plans to do so?

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1 reply
Tom Anderson | @ta52 | Jan 27, 2021
In reply to @cindylb "@ta52 Good for you! If you tolerated the regular infusions well and are feeling no real..." + (show)
@cindylb

@ta52 Good for you! If you tolerated the regular infusions well and are feeling no real ill effects now you may be one of the people who are able to tolerate this well. I hope it works very well for you and gets rid of the cancer and you stay relatively symptom free!! My husband had the complete opposite effect. He suffered with every symptom and now has some serious side effects from the maintenance. Moral of the story. Keep a positive attitude but pay close attention to anything that might seem amiss to you and report it quickly to your doctors. Hugs and hope for this continuing in a positive way for you!
Cindy B.

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Thanks, Cindy. With all of the scans come other issues that have probably been hiding for years: kidney stones, enlarged prostate, etc. which they are dealing with in the here-and-now to head off complications in the future. While I feel positive about my direction I carry a real heavy sense of survivor's guilt when I hear about people like your husband and see other cancer patients on a much tougher road when I'm at Mayo. Cancer is cruel.

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2 replies
Tom Anderson | @ta52 | Jan 27, 2021
In reply to @dutchw "It surprised me to hear about the Keytruda side effects, I have had very minimal, if..." + (show)
@dutchw

It surprised me to hear about the Keytruda side effects, I have had very minimal, if any, side effects with just Keytruda. I’m thinking it’s the Altima cocktail that’s causing your adverse side effects, not the Keytruda. Altima and Carboplatin was what I had for chemo with horrible side effects. I’m also confused about “first four infusions”, what is the reason for a four infusion limit? When on chemo the Zofram was infused but haven’t needed it with Keytruda. Keep up the good work and never give up.

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The first four infusions were Keytruda, Alimta and carboplation. The round of three infusions I started Monday are just Keytruda and Alimta.

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Tom Anderson | @ta52 | Jan 27, 2021
In reply to @dutchw "I’m learning so much from this site, thank all of you. At the risk of being..." + (show)
@dutchw

I’m learning so much from this site, thank all of you. At the risk of being chastised I’m going to take a chance. I give this alternative treatment and Keytruda full credit for currently being cancer free. I’m not advising/recommending this to anyone, just providing information and you can take it from there. I’ll answer any questions I can. “Fendendazole for cancer” or “my cancer story rocks”.

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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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Tom Anderson | @ta52 | Jan 27, 2021
In reply to @lisakuehl "What type of cancer are you dealing with? My husband was on maintenance Alimta following a..." + (show)
@lisakuehl

What type of cancer are you dealing with? My husband was on maintenance Alimta following a protocol of carboplatin/Alimta. By then end of the fourth cycle of combo meds, he was so run down that he was not able to recover. The maintenance Alimta did not prevent the spread of his pleural mesothelioma. His local oncologist told me, after my husband had died, that a recurrence of cancer is common following a treatment course. And his mesothelioma did come roaring back, into his only remaining healthy lung, within just a few short weeks. I don't recall any other of his cancer care team at Mayo saying that the cancer could be worse following treatment, Why don't doctors tell you these details before hand? I know that treatment can cure or aid many, but it can also accelerate death in many. If I had a do-over, I would have never agreed to putting him through any treatment at all. He was far worse off because of it and I cannot ever take that back.

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Your story is why I carry such a case of survivor's guilt where I constantly ask myself "why them?". I was a textbook case for the Ketruda/Alimta/Carboplatin initial course. My PD-L1 rating was an almost unheard of 100% so the Mayo team felt very positive going in and even more so after the first four treatments. I dare say the sad thing is that we are near the opposite ends of the healing spectrum. I don't know much about Mesothelioma other than it is far more insidious than other lung cancers. I start each day with the hope that today will be the day that new therapy comes along for all cancers that works as well as immunotherapy has for some of us.

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Merry, Alumni Mentor | @merpreb | Jan 27, 2021
In reply to @ta52 "Thanks, Cindy. With all of the scans come other issues that have probably been hiding for..." + (show)
@ta52

Thanks, Cindy. With all of the scans come other issues that have probably been hiding for years: kidney stones, enlarged prostate, etc. which they are dealing with in the here-and-now to head off complications in the future. While I feel positive about my direction I carry a real heavy sense of survivor's guilt when I hear about people like your husband and see other cancer patients on a much tougher road when I'm at Mayo. Cancer is cruel.

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@ta52- Everyone's life's journey is different, and so are their cancer journeys. After my first lung surgery there wasn't any protocol for treatments. And I felt guilty for not suffering like everyone else. I felt like I had joined a group, but was on probation because I didn't have all of the credentials. Looking back I can certainly understand this thinking but it's unrealistic. For me, I felt like I hadn't suffered enough so I needed more treatments. It was part of my terror This is what feeling survivor's gilt is all about. Of course I feel horrible for all of us. I've had 23+ years of it and watching people who were friends die.

Right now it is considered part of PTSD.
https://www.medicalnewstoday.com/articles/325578#what-is-it

My son once asked me, "Mom, what do you get out of feeling guilty?" Boy, did that stop me short. What I got out of it was beating myself up about not quitting smoking sooner. It wasn't actually about anyone else. But everyone is different. Everyone has their own reasons. It's a great question to ask though: "What do we get out of it?"

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1 reply
Tom Anderson | @ta52 | Jan 27, 2021
In reply to @dutchw "Yes it is Merry. My reaction was the same as yours at first but after my..." + (show)
@dutchw

Yes it is Merry. My reaction was the same as yours at first but after my wife, a retired RN, and I did a lot of research we decided to give it a try. At that point, what did I have to lose? 12 weeks later I was cancer free and Dr called me a miracle. Maybe it was the Keytruda, maybe it had nothing to do with fenbendazole, maybe a combination, all I can say is something worked for me, I’m grateful and believe I’m alive so I can share my story. I’ve had absolutely no side effects, well just one, tried scratching behind my ear with my foot and threw my back out . lol.

Jump to this post

You have to have humor, Dutch; it always helps. When the nurse set my IV on Monday knicked a vein. When she came back after a few minutes, pulled back the heated blanket and saw a lump about the size of a large grape at the injection site she went into full panic mode. You don't want a panicy nurse so I just said "now you can call me Lumpy" and that did the trick. There are times when you just have to do the unexpected and laugh at cancer.

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2 replies
Tom Anderson | @ta52 | Jan 27, 2021
In reply to @merpreb "@ta52- Everyone's life's journey is different, and so are their cancer journeys. After my first lung..." + (show)
@merpreb

@ta52- Everyone's life's journey is different, and so are their cancer journeys. After my first lung surgery there wasn't any protocol for treatments. And I felt guilty for not suffering like everyone else. I felt like I had joined a group, but was on probation because I didn't have all of the credentials. Looking back I can certainly understand this thinking but it's unrealistic. For me, I felt like I hadn't suffered enough so I needed more treatments. It was part of my terror This is what feeling survivor's gilt is all about. Of course I feel horrible for all of us. I've had 23+ years of it and watching people who were friends die.

Right now it is considered part of PTSD.
https://www.medicalnewstoday.com/articles/325578#what-is-it

My son once asked me, "Mom, what do you get out of feeling guilty?" Boy, did that stop me short. What I got out of it was beating myself up about not quitting smoking sooner. It wasn't actually about anyone else. But everyone is different. Everyone has their own reasons. It's a great question to ask though: "What do we get out of it?"

Jump to this post

I've had colds and the flu and sinus infections that have wiped me out more than cancer and the ensuing treatments. I mowed the lawn, shoveled snow and carried a 4.0 GPA on three classes at a Big Ten university in the midst of my treatment last fall. And then I go to Mayo and look around the Medical Oncology waiting room and see the other side and think not only is cancer cruel but, if you can be lucky to have cancer, I am lucky to have a form that responds to immunotherapy.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Jan 27, 2021
In reply to @ta52 "You have to have humor, Dutch; it always helps. When the nurse set my IV on..." + (show)
@ta52

You have to have humor, Dutch; it always helps. When the nurse set my IV on Monday knicked a vein. When she came back after a few minutes, pulled back the heated blanket and saw a lump about the size of a large grape at the injection site she went into full panic mode. You don't want a panicy nurse so I just said "now you can call me Lumpy" and that did the trick. There are times when you just have to do the unexpected and laugh at cancer.

Jump to this post

@ta52- You devil, you! I had a port. Wouldn't that be more comfortable for you? It takes no time at all to be placed. Anyway one of my nurses, while inserting the needle into my port turned to answer a question that my husband asked and I inhaled very loudly- as if I was injured. She turned to me with the biggest eyes. I had her attention though! lol

There was a guy who would show up with donuts and a comment for everything. Finally, one day, even the nurses couldn't stand it so they increased some medicine in his infusion that put him out. You do have to survive anyway you can! haha

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Jan 27, 2021
In reply to @ta52 "I've had colds and the flu and sinus infections that have wiped me out more than..." + (show)
@ta52

I've had colds and the flu and sinus infections that have wiped me out more than cancer and the ensuing treatments. I mowed the lawn, shoveled snow and carried a 4.0 GPA on three classes at a Big Ten university in the midst of my treatment last fall. And then I go to Mayo and look around the Medical Oncology waiting room and see the other side and think not only is cancer cruel but, if you can be lucky to have cancer, I am lucky to have a form that responds to immunotherapy.

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@ta52- Yes, you sure are lucky. That's what we need to do is to be thankful for all that we do have. I know, it sounds touchy-feely but when you have cancer, touchy-feely works. After I recovered from my first cancer I had 10 wonderful years of no cancer and I traveled to Europe and went to Paris for the first of 3 trips. I changed my life totally around. I have to rely on why I made my changes to keep me going, especially after 10 years when I had to do it again, and then 4 more times.

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