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.

@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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@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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@ina3– Hi. How is your dad doing? Did your doctor say that the decision was up to you to choose which one? As you know, we are not medical professionals so we can't advise you on drugs at all. I think that your doctor is trying drugs, not initially meant for lung cancer, that has worked on other parts of the body. Has your dad's doctor mentioned that his cancer has spread beyond what was oringinally thought?

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@colleenyoung

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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SHORTSHOT/NANCY) HI COLLEEN, I HAVE HAD A PET SCAN WITH SURGER AND A BI OPSY ON A GROWTH AS BIG AS MY FISH IN MY LEFT SIDE. IT GREW FROM MY GROIN TO MY RIBS. THE DARN THING EVEN GETS CAUGHT ON MY RIBS. IT IS CANCER AND I WILL KNOW WHAT KIND NEXT TUESDAY. THEN ALSO WILL FIND OUT WHAT TREATMENT IF ANY IS AVAILABLE. DAY BEFORE YESTERDAY I FELL IN MY OFFICE ROOM AND FELL ON TO MY VACUUM CLEANER. i LANDED ON MY RIGHT SIDE AND BACK. HAVING DIFFICULTY BREATHING. i EVEN HAVE SOME CANCER GROWING ON MLY HEAD. NOT FUN. JUST WANTED TO LET YOU KNOW. . NANCY

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@shortshot80

SHORTSHOT/NANCY) HI COLLEEN, I HAVE HAD A PET SCAN WITH SURGER AND A BI OPSY ON A GROWTH AS BIG AS MY FISH IN MY LEFT SIDE. IT GREW FROM MY GROIN TO MY RIBS. THE DARN THING EVEN GETS CAUGHT ON MY RIBS. IT IS CANCER AND I WILL KNOW WHAT KIND NEXT TUESDAY. THEN ALSO WILL FIND OUT WHAT TREATMENT IF ANY IS AVAILABLE. DAY BEFORE YESTERDAY I FELL IN MY OFFICE ROOM AND FELL ON TO MY VACUUM CLEANER. i LANDED ON MY RIGHT SIDE AND BACK. HAVING DIFFICULTY BREATHING. i EVEN HAVE SOME CANCER GROWING ON MLY HEAD. NOT FUN. JUST WANTED TO LET YOU KNOW. . NANCY

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@shortshot80 Hi Nancy,
Thanks for your update. I am so sorry to hear about your fall and the difficulty you are having breathing. What a tough place to be. Have you talked with your doctors about Palliative Care (different from hospice care)? It provides comfort care when you have a serious illness. Here is some information from Mayo's website,
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
Perhaps one of your children could talk with your doctor about consulting with a Palliative Care team.

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@shortshot80

SHORTSHOT/NANCY) HI COLLEEN, I HAVE HAD A PET SCAN WITH SURGER AND A BI OPSY ON A GROWTH AS BIG AS MY FISH IN MY LEFT SIDE. IT GREW FROM MY GROIN TO MY RIBS. THE DARN THING EVEN GETS CAUGHT ON MY RIBS. IT IS CANCER AND I WILL KNOW WHAT KIND NEXT TUESDAY. THEN ALSO WILL FIND OUT WHAT TREATMENT IF ANY IS AVAILABLE. DAY BEFORE YESTERDAY I FELL IN MY OFFICE ROOM AND FELL ON TO MY VACUUM CLEANER. i LANDED ON MY RIGHT SIDE AND BACK. HAVING DIFFICULTY BREATHING. i EVEN HAVE SOME CANCER GROWING ON MLY HEAD. NOT FUN. JUST WANTED TO LET YOU KNOW. . NANCY

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@shortshot80– In my last appointment at the hospital where I am treated and where my doctors are my Oncologist sais that Palliative care is where I am. Since there is no cure for my type of cancer I am treated in a Whack-a-mole fashion. As different lesion changes take place my 3 doctors decide what they should do- do they zap it with SBRT or try a different approach. Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.
I'm wondering if you have decided to stop any treatments that will prolong your life or just want to be made comfortable. Have you discussed this with your medical team and what do they recommend?

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@merpreb

@shortshot80– In my last appointment at the hospital where I am treated and where my doctors are my Oncologist sais that Palliative care is where I am. Since there is no cure for my type of cancer I am treated in a Whack-a-mole fashion. As different lesion changes take place my 3 doctors decide what they should do- do they zap it with SBRT or try a different approach. Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.
I'm wondering if you have decided to stop any treatments that will prolong your life or just want to be made comfortable. Have you discussed this with your medical team and what do they recommend?

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@shortstop- Do you have the results from your biopsy as yet?

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@merpreb

@shortstop- Do you have the results from your biopsy as yet?

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yes the results are in. I have the cancer that is the 3 cell carcinoma that is all over my body and so far there is nothing to combat it. not sure just what i will do now. nancy shortshot

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