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.

@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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Just so your post, sending hugs and energy your way, was the fall part of this development. Wow, really don't know what to say, you are in my heart and will keep you there. Keep us posted when you can.

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@shortshot80

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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@shortshot80– Nancy, this is definitely sad news. You have been pretty honest on Connect about your journey with all of your cancers. I'm wondering if you might be willing to talk about what has gone through your mind at a time like this and when you have decided what you will do, to share it with us. I will understand if this is too personal or too soon.

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@shortshot80

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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@shortshot80 Hello Nancy,

I'm glad that you shared with Connect this difficult news. Please know how much I appreciate the very valiant way you've lived your life and taken on cancer, an unwanted opponent. You have really fought this battle with everything at your disposal.

Let me know how we can best support you now. Are you considering Palliative Care (which will provide more comfort for you)?

Connect's listening ears are here for you! Much love, blessings, and prayers go with this post.

Liked by meka

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@hopeful33250

@shortshot80 Hello Nancy,

I'm glad that you shared with Connect this difficult news. Please know how much I appreciate the very valiant way you've lived your life and taken on cancer, an unwanted opponent. You have really fought this battle with everything at your disposal.

Let me know how we can best support you now. Are you considering Palliative Care (which will provide more comfort for you)?

Connect's listening ears are here for you! Much love, blessings, and prayers go with this post.

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hI tERESA, I WILL GET HOSPICE SOON… WANT TO WAIT COUPLE WEEKS AS MEDICARE GETS UNHAPPY IF IS DO IT TOO SOON. WAITING TO SEE IF ONCOLOGIST GETS ANYTHING FOR A TREATMENAT. NANCY

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