After Keytruda, what's next?

Posted by liz8716 @liz8716, Wed, Aug 28 10:38am

@merpreb …Hi, my name is Elizabeth. 31 yrs old.I was diagnosed with stage IV nsclc in April. I saw your story on here and it has given me hope. I’m currently on keytruda. Unfortunately my oncologist at this time says there is no cure and that keytruda can only be administered for 2 years. That she is only helping me live longer at this point because there is no cure. I did have taxol and carboplatin (4 rounds). My tumors have shrunk. But when I ask the dr “what next after 2 years of keytruda she says we’ll wait and see. It’s sort frustrating. I have to ask. What was your treatment?? Because the 5 year mark almost sounds impossible from what my dr states. Or if anyone else here knows of any new treatments.

@liz8716– Welcome to Mayo Connect Liz. It must have been devastating to receive the news about Keytruda. why was your Chemo stopped if your tumors shrunk? You are so young to hear this news, even if you smoked, it's young. How are you feeling on Keytruda?
I have a type of cancer that is does not respond well to chemo, although I did have it about 10 years ago. I have what is called, multifocal adenocarcinoma of the lung. I have several cancers at a time in one or both lung. I have had cancer since 1997, although that was a different NSCLC. The 10 years later the multifocal adenocarcinoma started up.
Have you tried any trials?

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I would hang in there Elizabeth and take it one day at a time (though sometimes that takes some real effort). Cancer treatment is moving rapidly and the resilience of your youth is on your side. Also hope id a powerful friend. I am sending prayers

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Hi Liz.
I'm on Keytruda as well. As this time that's the only treatment I've been taking. My oncologist never said anything to me about only being on Keytruda for only 2 years. I'm going to ask next time I go in. Everyone is different keep smiling and keep fighting. Prayers

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@merpreb

@liz8716– Welcome to Mayo Connect Liz. It must have been devastating to receive the news about Keytruda. why was your Chemo stopped if your tumors shrunk? You are so young to hear this news, even if you smoked, it's young. How are you feeling on Keytruda?
I have a type of cancer that is does not respond well to chemo, although I did have it about 10 years ago. I have what is called, multifocal adenocarcinoma of the lung. I have several cancers at a time in one or both lung. I have had cancer since 1997, although that was a different NSCLC. The 10 years later the multifocal adenocarcinoma started up.
Have you tried any trials?

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@liz8716 although I’m older than you, I’m in the same Keytruda boat with you. And my drs are also not offering much encouragement. Keep posting, take care of yourself. Get a 2nd opinion.

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@2onlow8, @schmeeckle64, @bentrivercarla– Multifocal Adeno is such a fickle cancer. We never know what it's going to do. It's maddening and frustrating and so so scary. But please don't consider "giving up". I've heard this on Connect lately and it makes me feel very discouraged and it's negative for the rest of us. What helps keep us going is hope, based on survival so if you are planning to just stop your treatments please think of others when you do, especially if you are up and about. What do you think?

Liked by alamogal635

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@merpreb

@2onlow8, @schmeeckle64, @bentrivercarla– Multifocal Adeno is such a fickle cancer. We never know what it's going to do. It's maddening and frustrating and so so scary. But please don't consider "giving up". I've heard this on Connect lately and it makes me feel very discouraged and it's negative for the rest of us. What helps keep us going is hope, based on survival so if you are planning to just stop your treatments please think of others when you do, especially if you are up and about. What do you think?

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With all due respect Mary I find your concern for your own discouragement and the possible discouragement of the "others" to who you infer to be insensitive and possibly hurtful to Liz. Each sufferer has the human and legal right to consider, express, and decide these things for themselves based on their own values and life goals. I do not know your professional credentials in counseling but I would have far preferred you encouraged Liz to seek that second opinion and more importantly the services of a competent counselor.

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@2onlow8

@liz8716 although I’m older than you, I’m in the same Keytruda boat with you. And my drs are also not offering much encouragement. Keep posting, take care of yourself. Get a 2nd opinion.

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@liz8716 have you had molecular testing done? Foundation One? This could unlock some helpful keys to future treatment possibilities.

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Have not heard of it.

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@richcolleen

Have not heard of it.

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@richcolleen foundation medicine.com

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@bentrivercarla

With all due respect Mary I find your concern for your own discouragement and the possible discouragement of the "others" to who you infer to be insensitive and possibly hurtful to Liz. Each sufferer has the human and legal right to consider, express, and decide these things for themselves based on their own values and life goals. I do not know your professional credentials in counseling but I would have far preferred you encouraged Liz to seek that second opinion and more importantly the services of a competent counselor.

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@bentrivercarla– Your response would have been a great way but I didn't mention Liz as she doesn't have my cancer. Sometimes I just write a lousy post and perhaps this one is just that. I have already responded to Liz 's first post and am waiting for her response to it. I will go from there. Thank you

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@merpreb

@2onlow8, @schmeeckle64, @bentrivercarla– Multifocal Adeno is such a fickle cancer. We never know what it's going to do. It's maddening and frustrating and so so scary. But please don't consider "giving up". I've heard this on Connect lately and it makes me feel very discouraged and it's negative for the rest of us. What helps keep us going is hope, based on survival so if you are planning to just stop your treatments please think of others when you do, especially if you are up and about. What do you think?

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Agree with you. We all need hope!!!!!

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@schmeeckle64

Hi Liz.
I'm on Keytruda as well. As this time that's the only treatment I've been taking. My oncologist never said anything to me about only being on Keytruda for only 2 years. I'm going to ask next time I go in. Everyone is different keep smiling and keep fighting. Prayers

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Thank you for prayers. Yes that is what she says. I did ask what after the 2 years. She told me to have hope something new comes out meanwhile

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@2onlow8

@liz8716 have you had molecular testing done? Foundation One? This could unlock some helpful keys to future treatment possibilities.

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Honestly I am not sure exactly the names of testing that have been done. This is a good question I can ask my oncologist. Sometimes I don't know what to ask. Thank you

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@liz8716– Good morning. This must be very scary and confusing for you. Many people, including myself have wondered what questions to ask. One thing I will encourage you to do is to get a second and maybe 3rd opinion. Get copies of all of your blood work, treatments and chemo infusions. I don't think that you have told us what kind of lung cancer you have. Different types of cancers work better than others with Keytruda but it is showing a lot of promise and research is extremely strong for lung cancer. There have been a lot of improvements in this area with new drugs and new treatments.
When I got my first cancer 5 years also looked like it was unreachable. But it's there. And it's hard not to think about it. And it's almost impossible to think about nothing else!
I have had both chemo and SBRT. I had navelbine and cisplatin. That was awful. I had chemo twice a week for 4 months. SBRT is:Stereotactic radiation therapy. Stereotactic radiation therapy, also called stereotactic external-beam radiation therapy and stereotaxic radiation therapy, is a type of external radiation therapy that uses special equipment to position the patient and precisely deliver radiation to a tumor. (Wikipedia).
Do you have more than one major hospital in your area? Are you healthy enough to travel to seek a second opinion?

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@merpreb

@liz8716– Good morning. This must be very scary and confusing for you. Many people, including myself have wondered what questions to ask. One thing I will encourage you to do is to get a second and maybe 3rd opinion. Get copies of all of your blood work, treatments and chemo infusions. I don't think that you have told us what kind of lung cancer you have. Different types of cancers work better than others with Keytruda but it is showing a lot of promise and research is extremely strong for lung cancer. There have been a lot of improvements in this area with new drugs and new treatments.
When I got my first cancer 5 years also looked like it was unreachable. But it's there. And it's hard not to think about it. And it's almost impossible to think about nothing else!
I have had both chemo and SBRT. I had navelbine and cisplatin. That was awful. I had chemo twice a week for 4 months. SBRT is:Stereotactic radiation therapy. Stereotactic radiation therapy, also called stereotactic external-beam radiation therapy and stereotaxic radiation therapy, is a type of external radiation therapy that uses special equipment to position the patient and precisely deliver radiation to a tumor. (Wikipedia).
Do you have more than one major hospital in your area? Are you healthy enough to travel to seek a second opinion?

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@liz8716– Here is a list of questions that Ihave used my self from National Coalition For Survivorship:
Essential Questions to Ask Your Doctor

What information do I need to help me make a decision about treatment?
What information do you use to make treatment recommendations for me?
What are your realistic goals for my treatment?
What are the chances that I can be cured?
What are my chances of a long-term response with good quality of life?
Are there clinical trials available to me?
How will I feel during treatment? Will I be able to work?
Take care of my family? Travel? Be around young children?
What help will I need in managing the side effects of treatment? When and for how long?
Should I consider a second opinion regarding my diagnosis and treatment?
Are there different approaches to treating my kind of cancer?

Liked by 2onlow8

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