Keytruda/Alimta Maintenance Side Effect

Posted by ta52 @ta52, Jan 26 6:06am

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?

@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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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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@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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@dutchw My husband had four intiial chemo treatments (Carboplatin, Alimpta, Keytruda) with horrible side effects. The maintenance was Alimpta/Keytruda. The first treatments worked and the maintenance failed. Chemo, radiation, and immuntherapy can all cause heart effects. Our doctors are leaning toward the immunotherapy having the rare side effects we're seeing now. Also, the Keytruda./Alimpta is not working. After we stopped the initial full treatment rounds, the cancer returned and spread. My husband has a cancer that can't quite identify (cancer of unknown primary) so it's more likely that the Keytruda wasn't a good match to kill the cancer.

Hugs

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@cindylb

@dutchw My husband had four intiial chemo treatments (Carboplatin, Alimpta, Keytruda) with horrible side effects. The maintenance was Alimpta/Keytruda. The first treatments worked and the maintenance failed. Chemo, radiation, and immuntherapy can all cause heart effects. Our doctors are leaning toward the immunotherapy having the rare side effects we're seeing now. Also, the Keytruda./Alimpta is not working. After we stopped the initial full treatment rounds, the cancer returned and spread. My husband has a cancer that can't quite identify (cancer of unknown primary) so it's more likely that the Keytruda wasn't a good match to kill the cancer.

Hugs

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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”.

Liked by cindylb, ta52

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@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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@dutchw– Isn't this a de-wormer for animals? Please be careful and tell your Oncologist!

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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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@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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@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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@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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Hugs to you and so very sorry for your loss. I am caretaker for my husband and a cancer survivor myself. There is no way to predict how a treatment will be for each person or what the 'right' answer is. There are no 'right' answers. There is an opportunity cost with each medical decision we make. I'm sorry your husband suffered, it's truly one of the hardest things there is, watching a loved one suffer and trying to make daily decisions about their care, but you made a good decisions and all you could do. There is much that our doctors don't know yet and that makes the whole process challenging for them and especially for patients. How lucky your husband was to have you at his side and I hope you'll get some peace soon. It's very difficult. I'm there right now and I know I'll have questions, misgivings and yes, some anger and concern about the process we are going through for my husband's lung cancer.

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@merpreb

@dutchw– Isn't this a de-wormer for animals? Please be careful and tell your Oncologist!

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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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I appreciate all the reviews of Keytruda and other meds. Thankuounfor sharing

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@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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@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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@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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@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”.

Jump to this post

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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@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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