1. < Lung Cancer

Wife Just Diagnosed w/ ES SCLC - What Can We Expect?

Posted by rlogan @rlogan, Feb 19, 2022

My wife received the following diagnosis yesterday: Primary malignant neoplasm of lung, secondary malignant neoplasm of liver, secondary malignant neoplasm of vertebral column. Four months ago she had a chest x-ray performed and no anomalies were noted.

We have surmised that this is likely Extensive Stage Small Cell Lung Cancer.

She has been referred to a local oncologist and a PET-CT scan has been ordered by our doctor.

Last evening we requested an appointment at the Mayo Clinic - Jacksonville at the suggestion of a friend.

Can anyone tell us what we can expect over the next few days/weeks/months?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Merry, Alumni Mentor | @merpreb | Apr 11, 2022
In reply to @lidiagamble21 "I was very lucky. I was diagnosed with stage 3 lung cancer. Had chemo and radiation..." + (show)
@lidiagamble21

I was very lucky. I was diagnosed with stage 3 lung cancer. Had chemo and radiation on the same days and I never experienced any nausea or vomiting.
God willing Liz does well with the treatments. God bless her.

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@lidiagamble21- Welcome to our special Lung Cancer Group! How resilient you are!

One of the things so special about survivors like you is that you give hope to others! You share your downs and ups and what worked and what didn't and what might. You and everyone else in this group are able to understand you and what you feel when you express yourself.

Will you tell us more about your story and the treatments/care that you received?

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Merry, Alumni Mentor | @merpreb | Apr 11, 2022
In reply to @rlogan "Merry, she is on oxygen 24-7 so the only walking she really does is when we..." + (show)
@rlogan

Merry, she is on oxygen 24-7 so the only walking she really does is when we go for her doctor visits. The physical therapist showed her a way to walk around the house to get exercise and she has a stationary bicycle she can use also, just gotta get her more interested in using all the exercise tools available.....

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Good morning- Of course she is. As she gains more strength and wants to get out you might want to invest in a more comfortable way to carry oxygen. I have no personal knowledge as I am still oxygen free!

Here is a list that you might want to be put on your future list of possibilities:
https://gizmodo.com/advisor/portable-oxygen-concentrators/
I'm sure that Liz is going through immense changes as this has most likely hit her like a Mack truck. So much and much more quickly than I'm sure you both expected. Her interests right now are most likely very introspect, reevaluating her life and her thoughts about life and what it means. And she is probably very tired.

I understand her not being interested in exercising. Her life has become a heavy burden on her shoulders and yours. It's all part of the process that cancer entails. I'm sure that you realize most of this.
I can understand her not wanting to "talk" on Connect. When I had my first cancer I didn't want to talk to anyone other than my immediate family.

Please know that I am here whenever she wants to talk or she can Private message me, or not.

Please extend my thoughts to Liz. Take care.

Merry

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rlogan | @rlogan | Apr 11, 2022
In reply to @merpreb "I understand what you are saying. Chemo will most likely take a lot out of her...." + (show)
@merpreb

I understand what you are saying. Chemo will most likely take a lot out of her. But immunotherapy can be a different story. Aren't the results of her tests coming up soon? Let's see what happens with what she is subscribed, ok?

It might help if you walk with her. Walking will be her best friend in the coming weeks and months.

Will she walk with you?

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We are meeting with the Oncologist this afternoon and hopefully her Guardian genetic test results are back and he can discuss these with us. Will keep ya posted as we find out.

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1 reply
Merry, Alumni Mentor | @merpreb | Apr 12, 2022
In reply to @rlogan "We are meeting with the Oncologist this afternoon and hopefully her Guardian genetic test results are..." + (show)
@rlogan

We are meeting with the Oncologist this afternoon and hopefully her Guardian genetic test results are back and he can discuss these with us. Will keep ya posted as we find out.

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Best of luck. I'm thinking of you and Liz on this anxiety-filled day!

Merry

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rlogan | @rlogan | Apr 12, 2022

We met with the oncologist and the Guardian genomic test results came back confirming nonsquamous non-small cell lung cancer with no actionable genetic mutations and no PDL-1 expression. Essentially, there is no “targeted” treatment available. Her chemo will consist of Carboplatin and Alimta with immunotherapy using Keytruda scheduled every 3 weeks starting 4/26. She will also be receiving Xgeva injections every 4 weeks to help restore her diminished bone density. Finally, she will be taking Folic Acid (1 mg) daily and will receive a vitamin B-12 injection before each treatment to help counter the side effects of the Alimta chemo. Let's hope these treatments have a positive effect on reducing the tumors.......

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 12, 2022
In reply to @lidiagamble21 "I was very lucky. I was diagnosed with stage 3 lung cancer. Had chemo and radiation..." + (show)
@lidiagamble21

I was very lucky. I was diagnosed with stage 3 lung cancer. Had chemo and radiation on the same days and I never experienced any nausea or vomiting.
God willing Liz does well with the treatments. God bless her.

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I add my welcome, @lidiagamble21. Are you finished with treatments? How are you doing now?

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1 reply
lidiagamble21 | @lidiagamble21 | Apr 12, 2022
In reply to @colleenyoung "I add my welcome, @lidiagamble21. Are you finished with treatments? How are you doing now?" + (show)
@colleenyoung

I add my welcome, @lidiagamble21. Are you finished with treatments? How are you doing now?

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I finished chemo and radiation on June 2020. On remind now, hope it stays that way.
6 months ago the CT scan showed scaring or a new tumor. Had another biopsy and it was not cancer.
Following scan showed the “scar?” Had doubled in size!!!! This past March the were no changes and it was stable.
Radiologist oncologist and my oncologist said it was scar tissue from radiation.

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3 replies
lidiagamble21 | @lidiagamble21 | Apr 12, 2022
In reply to @lidiagamble21 "I finished chemo and radiation on June 2020. On remind now, hope it stays that way...." + (show)
@lidiagamble21

I finished chemo and radiation on June 2020. On remind now, hope it stays that way.
6 months ago the CT scan showed scaring or a new tumor. Had another biopsy and it was not cancer.
Following scan showed the “scar?” Had doubled in size!!!! This past March the were no changes and it was stable.
Radiologist oncologist and my oncologist said it was scar tissue from radiation.

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I still feel a little weak.

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2 replies
lidiagamble21 | @lidiagamble21 | Apr 12, 2022
In reply to @lidiagamble21 "I still feel a little weak." + (show)
@lidiagamble21

I still feel a little weak.

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On remission. Going on #2 years.

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dedehans | @dedehans | Apr 13, 2022
In reply to @rlogan "We met with the oncologist and the Guardian genomic test results came back confirming nonsquamous non-small..." + (show)
@rlogan

We met with the oncologist and the Guardian genomic test results came back confirming nonsquamous non-small cell lung cancer with no actionable genetic mutations and no PDL-1 expression. Essentially, there is no “targeted” treatment available. Her chemo will consist of Carboplatin and Alimta with immunotherapy using Keytruda scheduled every 3 weeks starting 4/26. She will also be receiving Xgeva injections every 4 weeks to help restore her diminished bone density. Finally, she will be taking Folic Acid (1 mg) daily and will receive a vitamin B-12 injection before each treatment to help counter the side effects of the Alimta chemo. Let's hope these treatments have a positive effect on reducing the tumors.......

Jump to this post

Please keep us posted on how Liz is faring...Just a note of something to you Liz that you may want to do....get wigs NOW while you still have your hair as you well may lose it (sorry, a fact). Saves the stress of doing it when hair starts to fall out. Wishing the best for you.

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