Stage IV lung cancer, what treatments work for you?

Posted by schmeeckle64 @schmeeckle64, May 22, 2019

Hi! I am Christie and am new to the group. I was diagnosed with stage IV lung cancer in January 2019. I am super excited to be a part of this group to see what treatments are people are taking and what is working for you. My doctor ordered a Caris report and found that my PD L1 levels were extremely high so he changed the course of my treatment to just doing the Keytruda instead of chemo and Keytruda. I’ve been doing the Keyruda now for 5 months now with good results and no side effects. That is my story in a nut shell.

Thank you for sharing the cute videos…

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@merpreb

@schmeeckle64– Good morning and Welcome to Connect. I am a Mentor for Mayo Connect and would like to join everyone in welcoming you. I have had lung cancer (Multifocal Adenocarcinoma of the lungs) since 1997 and my last one was 2 years ago, this fall. It is a NSCLC. I've had a lot of different treatments but have never had immunotherapy. I don't know if I'm eligible but I don't think so. I am so glad that you are responding to Keytruda. How are you feeling?

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Hi Merry! Thank you for reaching out. I am feeling really really good. Will be on round 7 of Keytruda next week. So far I have had no side effects. The past couple weeks my mouth has been really dry so I have been trying different things to help with that. Go in for a scan in July and that is freaking me out a little, but prayers help calm me down. What types of treatments have you had?

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@donnalb

Hi Christie, I was diagnosed with stage 4 squamous lung cancer in June of 2015. I did anything and everything the doctors told me to do and tried not to listen to all "cures" everyone else told me about! I have been in total remission for over 2.5 years now. Good luck in your battle and stay strong.

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That is WONDERFUL news. What treatment worked for you??? I love reading comments like yours. It truly gives me hope.

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@schmeeckle64

Hi Merry! Thank you for reaching out. I am feeling really really good. Will be on round 7 of Keytruda next week. So far I have had no side effects. The past couple weeks my mouth has been really dry so I have been trying different things to help with that. Go in for a scan in July and that is freaking me out a little, but prayers help calm me down. What types of treatments have you had?

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@schmeeckle64– Good morning. I know, I know, and you have tons of company. The thing is that these aren't just a routine test, like a yearly blood work test, but a test that literally can tell us if we are going to live for another 3 or 6 or 12 months or die.:
https://powerfulpatients.org/2018/07/24/coping-with-scanxiety-practical-tips-from-cancer-patients/
I have written a blog that you might be interested in reading about my journey with lung cancer:
https://my20yearscancer.com/
My next CT scan is in July too and I am a basket case about 2 weeks out. Sometimes I have any easier time with good feelings and others not so much. I try and stay busy with mind occupying activities. But they don't work a lot of the time.

What have you found to keep you busy? Do you work?

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@merpreb

@schmeeckle64– Good morning. I know, I know, and you have tons of company. The thing is that these aren't just a routine test, like a yearly blood work test, but a test that literally can tell us if we are going to live for another 3 or 6 or 12 months or die.:
https://powerfulpatients.org/2018/07/24/coping-with-scanxiety-practical-tips-from-cancer-patients/
I have written a blog that you might be interested in reading about my journey with lung cancer:
https://my20yearscancer.com/
My next CT scan is in July too and I am a basket case about 2 weeks out. Sometimes I have any easier time with good feelings and others not so much. I try and stay busy with mind occupying activities. But they don't work a lot of the time.

What have you found to keep you busy? Do you work?

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Thank you for sending the links. I will definitely check them out. I actually keep myself very busy. I am still working full time and have 4 little grandkids and another on the way this week. We live on 5 acres so I love to garden and mow. Thank you once again for the links. You are an inspiration.

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@schmeeckle64– You are an inspiration!!! What I failed to understand at the beginning of my journey was that exercise is the key ingredient to living under very difficult situations, be it weights, walking, gardening, kids, etc. Thank you for sharing your story.

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I might have join wrong group. This one looks more like me. In March I was diagnosed with stage 4 Malignant Neoplasm Adenocarcinoma of the lung which is Non curable. Every 21 days I get Carboplatin, Pembrolizumab and Pemetrexed. The Last scan (2nd) have nodules same and the massive tumor has stayed the same. First scan the tumor shrunk in half. I do get sick 8-10 days after each treatment and should be going back tomorrow but am skipping this next treatment to regroup. Was really sick last time and need time to feel ready for the next dose so I’ve asked to take this one off which Mayo Dr agreed.

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@richcolleen– Welcome again! You have made the right choice to protect your health. Boy do we have so much to contend with, lung cancer is so burdensome, so many decisions and trying to feel as well as can be. I hope that you pop right back up after your rest and get back to it! How are you feeling right now?

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@merpreb

@richcolleen– Welcome again! You have made the right choice to protect your health. Boy do we have so much to contend with, lung cancer is so burdensome, so many decisions and trying to feel as well as can be. I hope that you pop right back up after your rest and get back to it! How are you feeling right now?

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Got some strength back and energy. Back to treatments the 23rd of September. Then I’m shot a lot.

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@richcolleen Colleen, I am so pleased that you have some of your strength back. What do you mean that you are "shot a lot?"

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When on chemo I lose my energy.

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@richcolleen

When on chemo I lose my energy.

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@richcolleen– Of course! I do not know anyone who has said that they didn't get tired when having chemo. Thank you for clarifying this

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@richcolleen

I might have join wrong group. This one looks more like me. In March I was diagnosed with stage 4 Malignant Neoplasm Adenocarcinoma of the lung which is Non curable. Every 21 days I get Carboplatin, Pembrolizumab and Pemetrexed. The Last scan (2nd) have nodules same and the massive tumor has stayed the same. First scan the tumor shrunk in half. I do get sick 8-10 days after each treatment and should be going back tomorrow but am skipping this next treatment to regroup. Was really sick last time and need time to feel ready for the next dose so I’ve asked to take this one off which Mayo Dr agreed.

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Hello richcoleen: I have stage 4 Adenocarcinoma of the lung.. not sure of the Malignant Neoplasm that you mentioned. However, I have been On The CARBOplatin and Premetrexed for my first 5 chemo treatments and am now on just the Premetrexed which they are calling chemo maintenance.. No real side effects for me except thinning of the hair. It is shrinking my tumours for the most part… some of the tumours are staying the same.. just thought I would let you know I am not having the side effects.. Did you have any type of mutations? I am showing no mutations at this point but just went to London Ontario in Canada to have further testing of my tissue done through a clinical trial.. where they will do further testings that may show mutations that do not currently show up?? I saw Dr Welch in the link I just put in this email.. also it describes a bit of the Clinical Trial Called the OCTANE study.
https://www.lawsonresearch.ca/news/innovative-study-brings-next-generation-genome-sequencing-london-cancer-patients

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Has anyone added any of these chemo pills to the regiment? Xelota, Temozolomide, Packitaxel.

My dad with NCSLC stage IV, keytruda has been doing a great job but for his recent diagnose LMD (leptomeningeal mets) doctor suggested to take any of these pills. Based on my reading there are good results when its taken by patients with LMD and breast cancer. Was there any study for Lung cancer? Which of these three would work better for NCSLC? Xelota, Temozolomide, Packitaxel.

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@ina3

Has anyone added any of these chemo pills to the regiment? Xelota, Temozolomide, Packitaxel.

My dad with NCSLC stage IV, keytruda has been doing a great job but for his recent diagnose LMD (leptomeningeal mets) doctor suggested to take any of these pills. Based on my reading there are good results when its taken by patients with LMD and breast cancer. Was there any study for Lung cancer? Which of these three would work better for NCSLC? Xelota, Temozolomide, Packitaxel.

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Hi @ina3, I moved your message to this existing discussion about treatment options for stage 4 non-small cell lung cancer. @janlanderz @richcolleen @schmeeckle64 and @merpreb may have some thoughts or experiences with Xeloda, Paclitaxel, and/or Temozolomide.

Ina, would he take these drugs in addition to Keytruda? Are you having to decide which one?

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