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So my mother who is stage iv with metastasis to liver finally told me the truth about her diagnosis. she originally told me there was one tumor in one lung and a small spot in her liver and they didn't give her any idea of her survival rate. today she told me there are several small spots on 1 lung and then the small one in her liver. she has had 4 treatments of keytruda and the first scan looked good. her doc only did a scan this early because he was concerned because her voice  had become hoarse,  but he said nothing more is concerning him right now. she is due for another scan in a few weeks and has finally agreed to let me go with her and ask questions. What are some things I should be asking? one thing I want to ask, but maybe it's a stupid question is 

If the cancer is primarily the small spot in her liver and the small one in her kidney, why isn't surgery an option in the future? if the keytruda can get rid of the cancer in her liver, is a lung removal an option? Why isnt she beng given traditional  chemo along with the keytruda as that seems like a common treatment option?She truly feels like she only has 2 years because he mentioned that he can't promise she will be here longer. I've tried to tell her this isn't an expiration date and that he told her that before she was ever tested for keytruda. Am I wrong to give her hope at this stage? She is only 53. She is still very healthy. she goes to work every day and aside from feeling tired after treatment, she seems fine right now. she even gained all her weight back in the last few weeks. Thank you in advance for any suggestions. 

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There are no stupid questions. How do we learn what we are up against if we do not ask. I do recommend writing all your questions down. It helped me initially and even if the question seemed dumb I still needed the answer. The elephant in the room which no one wanted to ask was how long? My husband and son were kinda shocked when I did ask but I needed to know all of our options. So please ask away!

Hugs / Prayers,


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Hi there,

I am happy that your mom is allowing you to go with her to the doctor.  One important question to ask is if more than 50% of her cancer cells test positive for PD-L1.  If so, Keytruda has become the recommended 1st line treatment for NSCLC with PD-L1 mutation, at least for early stages.  Perhaps the doc is waiting to see how she responds to Keytruda before making a suggestion for lobectomy.  Another question would be why only Keytruda and not Keytruda and Chemo together for the first 8 sessions - the latter increases the effectiveness of the overall treatment.  And as Pegi said, there are no dumb questions and be sure to take a notebook to write everything down. 

I used these lists of questions to give me ideas of other questions to ask (there is a tab specifically for immunotherapy) https://www.lungevity.org/for-patients-caregivers/asking-right-questions/questions

When my mom was initially told her cancer recurrence was inoperable and that she would be treated with Keytruda/Chemo, she felt she was just buying time. Her ocologist (which doesn't have the most compassion) said that she was indeed buying time. But she would be buying months and maybe even years.  I personally do not feel you are giving your mom false hope.  The more I study Keytruda and see the amazing help it is giving people (including a relative that has used it for the past 2 years for advanced stage melanoma), it is easier to feel optimistic.  The fact that your mom is already healthy is good for her.  I also feel that when we believe something, it can either help us or hinder us.  Helping her to get over the idea that she has a 2 year expiration date may help her health-wise in the long-term.

I'm so very sorry you are having to travel on this journey with your mom.  No matter how old we are, it's still our momma who is sick and fighting for her life - it's not easy.  Take Care


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  • 3 weeks later...

Your mom may have had the scans by this time, but I wanted to chime in here. As others have said, there are no stupid questions. I was diagnosed almost 10 months ago, and I ask him a couple of questions at each appointment, because of things I read about here and elsewhere. So, ask whatever you want to know. I have a little notebook that I bring to my appointments, otherwise I'd probably forget something or not remember exactly what my doctor said. Also -- none of us have an expiration date stamped on us. I also asked my doctor "that question" when I was diagnosed and he said 6 to 12 months. I nearly fell off my chair. But he meant that as a "soft number"... if I didn't have any treatment, or if treatment didn't go well for me. No one can say with 100% certainty how long a patient will live, because there are so many variables. Your mom sounds like me -- I work full time, I feel perfectly normal most days, I cook, clean, work in the yard, etc.  My health, other than the cancer, is good, although I do get tired more easily now. I don't think you're giving your mom false hope. You'll help her to realize that despite this horrible disease, she can still do things she enjoys. There is definitely a "new normal" that she will come to terms with. We don't have to like what's happening, but doggone it, we don't have to let it rule every moment of every day. Last year, I thought  it was going to be my last Thanksgiving, last Christmas, etc. Now, I'm making plans for next summer's vacation. I've met several people through a local support group who have been fighting lung cancer for 3 years or more. Most of them had been told something similar to your mom. 

I'm so glad you're there for your mom. I have two sons in their 20's and they are a huge support for me. When my husband and I told them I had cancer, it was the hardest thing I've ever done. As a mom, I understand that your mom didn't tell you everything at once because she didn't want you to worry about her or be upset, frightened, etc. Even though they're adults I feel protective toward my "boys".  But I'm proud that these young men are going to be with me through the good and the bad. Your mom feels the same, I'm sure. 

Take care, and I hope you will let us know how things go. 



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