Stage 1b non small lung Cancer and Keytruda: What to expect?

Posted by ehb999 @ehb999, Jul 31, 2023

I am looking to have some insight on what to expect.

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Hi ehb999,
My husband has lung cancer and had Keytruda treatments. We read the side effects but were convinced by the doctor, that they were rare side effects and that the therapy would help immensely. After having the Keytruda treatment, my husband almost died by contracting Pancreatitis a known side effect! It was because of our very good primary doctor and prayers, that he got to the right specialist and after a long battle, my husband was fine. However, he says he will never have another Keytruda treatment. The doctors didn't like that decision but it is my husband's body and money! (Keytruda cost $25,000 per infusion!) He received two infusions per month. That was 5 years ago. My husband is doing great! He's 82 and leaf blows the yard, trims trees, carries heavy garbage bags to the dumpster, drives the car and fixes breakfast, lunch and dinner! We prayed a lot and our prayers were answered.
I would suggest doing as much research on Keytruda as you can before you make a decision. Don't just take what happened to my husband as the only result. Everyone is different when it comes to medication. Once you have a lot of information, then you can decide what is best for you. Pray about it and God will direct you.

I'll remember you in my prayers.
PML

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With 1B, why not surgery and Tagrisso?

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Hi @ehb999, Welcome to Connect. I see you did find another string regarding Keytruda.
I looked for a study with the percentages of participants with each side effect, but I'm not finding one yet. I'll keep looking.
You may have the official medication insert already, but this is what I've found so far (https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/125514s037lbl.pdf):
"What are the possible side effects of KEYTRUDA?
KEYTRUDA can cause serious side effects. See “What is the most important information I should know about
KEYTRUDA?”
Common side effects of KEYTRUDA when used alone include: feeling tired, pain, including pain in muscles, bones or
joints and stomach-area (abdominal) pain, decreased appetite, itching, diarrhea, nausea, rash, fever, cough, shortness of
breath, and constipation.
Common side effects of KEYTRUDA when given with certain chemotherapy medicines include: feeling tired or weak,
nausea, constipation, diarrhea, decreased appetite, rash, vomiting, cough, trouble breathing, fever, hair loss, and
inflammation of the nerves that may cause pain, weakness, and paralysis in the arms and legs.
In children, feeling tired, vomiting and stomach-area (abdominal) pain, and increased levels of liver enzymes and
decreased levels of salt (sodium) in the blood are more common than in adults.
These are not all the possible side effects of KEYTRUDA. For more information, ask your doctor or pharmacist. "

Have you had other treatments or surgery, or are you starting with Keytruda as an initial treatment?
What is your PDL-1 level?

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@lls8000

Hi @ehb999, Welcome to Connect. I see you did find another string regarding Keytruda.
I looked for a study with the percentages of participants with each side effect, but I'm not finding one yet. I'll keep looking.
You may have the official medication insert already, but this is what I've found so far (https://www.accessdata.fda.gov/drugsatfda_docs/label/2018/125514s037lbl.pdf):
"What are the possible side effects of KEYTRUDA?
KEYTRUDA can cause serious side effects. See “What is the most important information I should know about
KEYTRUDA?”
Common side effects of KEYTRUDA when used alone include: feeling tired, pain, including pain in muscles, bones or
joints and stomach-area (abdominal) pain, decreased appetite, itching, diarrhea, nausea, rash, fever, cough, shortness of
breath, and constipation.
Common side effects of KEYTRUDA when given with certain chemotherapy medicines include: feeling tired or weak,
nausea, constipation, diarrhea, decreased appetite, rash, vomiting, cough, trouble breathing, fever, hair loss, and
inflammation of the nerves that may cause pain, weakness, and paralysis in the arms and legs.
In children, feeling tired, vomiting and stomach-area (abdominal) pain, and increased levels of liver enzymes and
decreased levels of salt (sodium) in the blood are more common than in adults.
These are not all the possible side effects of KEYTRUDA. For more information, ask your doctor or pharmacist. "

Have you had other treatments or surgery, or are you starting with Keytruda as an initial treatment?
What is your PDL-1 level?

Jump to this post

I have had surgery removed 3.8 tumor, 22 lumph nodes clean all margins clean and i did Chemo.
DOn't know my PDL-1 level
where would I find that

REPLY
@pml

Hi ehb999,
My husband has lung cancer and had Keytruda treatments. We read the side effects but were convinced by the doctor, that they were rare side effects and that the therapy would help immensely. After having the Keytruda treatment, my husband almost died by contracting Pancreatitis a known side effect! It was because of our very good primary doctor and prayers, that he got to the right specialist and after a long battle, my husband was fine. However, he says he will never have another Keytruda treatment. The doctors didn't like that decision but it is my husband's body and money! (Keytruda cost $25,000 per infusion!) He received two infusions per month. That was 5 years ago. My husband is doing great! He's 82 and leaf blows the yard, trims trees, carries heavy garbage bags to the dumpster, drives the car and fixes breakfast, lunch and dinner! We prayed a lot and our prayers were answered.
I would suggest doing as much research on Keytruda as you can before you make a decision. Don't just take what happened to my husband as the only result. Everyone is different when it comes to medication. Once you have a lot of information, then you can decide what is best for you. Pray about it and God will direct you.

I'll remember you in my prayers.
PML

Jump to this post

@pml, What a scary situation, that had to be difficult to have to face that life threatening condition, all on top of cancer. I'm so glad there is a happy ending to your husband's story. Were there any early warning signs that others can watch for? Or did the pancreatitis present fairly quickly?

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@ehb999

I have had surgery removed 3.8 tumor, 22 lumph nodes clean all margins clean and i did Chemo.
DOn't know my PDL-1 level
where would I find that

Jump to this post

@ehb999, I'm glad they found the cancer at an early stage, and that you are through the surgery and chemo! Now you have a difficult decision to make, in what to do next.
Your oncologist would have the PDL-1 score. They likely ran lab tests against the removed tumor tissue. PDL-1 is an indicator that is used to identify how effective immunotherapy might be on your specific cancer. Some cancers have more proteins than others that make them more or less susceptible to the immune system, and immunotherapy.

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@lls8000

@pml, What a scary situation, that had to be difficult to have to face that life threatening condition, all on top of cancer. I'm so glad there is a happy ending to your husband's story. Were there any early warning signs that others can watch for? Or did the pancreatitis present fairly quickly?

Jump to this post

Hi Lisa,
The warning signs for my husband were vomiting, not being to hold down any food, diarrhea and losing a lot of weight. I called the cancer doctor who ignored me and had her clerk return my call. She said they could prescribe some nausea medicine. I told her I wanted him to see the cancer doctor. She evaded my question. I could tell that my husband was getting worse so I emailed our primary care doctor who immediately answered and said, "Can you come in tomorrow?" Our primary care doctor could see it was pancreatitis and referred him to a specialist who saw him right away and got him started on the right medicine so he could eat again. I fed my husband beef stew made with a high quality of beef which was all he could eat. We also prayed a lot! He recovered very fast and was just fine. And, we found another cancer doctor. However, my husband says he will never have another Keytruda treatment and I don't blame him. From now on, we just put everything in God's hands.
PML

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I have n s c lung cancer stage 4, diagnosed September 2022. I was given keytruda with trial drug, then with standard treatments. It showed no benefit for me. However for a close relative with melanoma it did it’s work and he is now in remission.
There are just so many unknowns, that’s the difficult part of this journey.

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@ehb999

I have had surgery removed 3.8 tumor, 22 lumph nodes clean all margins clean and i did Chemo.
DOn't know my PDL-1 level
where would I find that

Jump to this post

Ask the dr or look a the biopsy report.

REPLY
@dianemb

I have n s c lung cancer stage 4, diagnosed September 2022. I was given keytruda with trial drug, then with standard treatments. It showed no benefit for me. However for a close relative with melanoma it did it’s work and he is now in remission.
There are just so many unknowns, that’s the difficult part of this journey.

Jump to this post

Thank you

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