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 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.......

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Hi Bob- Well this isn't what I wanted to hear, but there is action now to take! I hope that with all of the visits both at the hospital and at home Liz can rest up and prepare for her next adventure in this next stage of her journey.

DO you have any specific plans, other than what meds have been prescribed to her, to carry out? WIll Liz go to the hospital/clinic for her infusions or will the hospice nurses be able to give them to her?

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1 reply
Merry, Alumni Mentor | @merpreb | Apr 13, 2022
In reply to @lidiagamble21 "I still feel a little weak." + (show)
@lidiagamble21

I still feel a little weak.

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Lidia- Good morning. When you say that you still feel weak can you describe what this means? Are you physically weak? Lack of energy, lethargy, depression?

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Merry, Alumni Mentor | @merpreb | Apr 13, 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 have scar tissue too. My body loves making scar tissue which doesn't help me one bit! My radiation scar grew too and my doctors thought that they might have to go back and zap it but it finally stopped scarring. Now I have another lesion under it and it will need to be zapped later this year, most likely.

Now that you are in remission what medications/inhalers do you need to take? Have you gone to pulmonary rehab to help you bounce back and start you on an exercise program?

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Mentor
Lisa, Volunteer Mentor | @lls8000 | 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

That’s not the best news, but I’m glad that there is a plan in place, and you can both move forward knowing that you have treatment designed for the specific type of cancer. Wishing you the best, and speedy tumor shrinkage!

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rlogan | @rlogan | Apr 13, 2022
In reply to @merpreb "Hi Bob- Well this isn't what I wanted to hear, but there is action now to..." + (show)
@merpreb

Hi Bob- Well this isn't what I wanted to hear, but there is action now to take! I hope that with all of the visits both at the hospital and at home Liz can rest up and prepare for her next adventure in this next stage of her journey.

DO you have any specific plans, other than what meds have been prescribed to her, to carry out? WIll Liz go to the hospital/clinic for her infusions or will the hospice nurses be able to give them to her?

Jump to this post

Merry, thanks for your continued support!!!

We have a full service cancer treatment center here in town (Hope Regional Cancer Center), this is where Liz went to get her radiation treatments and where she will also go for her chemo. She is still ambulatory so we will be going to the center for her chemo treatments & immunotherapy every 3 weeks and if necessary for follow up radiation treatments.

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1 reply
rlogan | @rlogan | Apr 13, 2022
In reply to @dedehans "Please keep us posted on how Liz is faring...Just a note of something to you Liz..." + (show)
@dedehans

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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Dede, that is a great idea that I had not even thought of. Any suggestions as to where to look in a smallish town?

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1 reply
rlogan | @rlogan | Apr 13, 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.

Jump to this post

Wow Lidia, glad to hear about your progress - gives others something to look forward to.
I hope I can share a similar story for Liz in several more months!!!

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1 reply
dedehans | @dedehans | Apr 13, 2022
In reply to @rlogan "Dede, that is a great idea that I had not even thought of. Any suggestions as..." + (show)
@rlogan

Dede, that is a great idea that I had not even thought of. Any suggestions as to where to look in a smallish town?

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These are good...most of my cancer buds like thie Raquel Welch line......best to get synthetic as they wash easily. Real hair wigs....tougher to wash....If Liz orders one or more be sure to get the best cotton caps to go under it.....get more than one. ..
https://www.hairuwear.com/raquel-welch/

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lidiagamble21 | @lidiagamble21 | Apr 13, 2022
In reply to @rlogan "Wow Lidia, glad to hear about your progress - gives others something to look forward to...." + (show)
@rlogan

Wow Lidia, glad to hear about your progress - gives others something to look forward to.
I hope I can share a similar story for Liz in several more months!!!

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I hope so too.
A positive attitude and know that God is with you.

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Merry, Alumni Mentor | @merpreb | Apr 14, 2022
In reply to @rlogan "Merry, thanks for your continued support!!! We have a full service cancer treatment center here in..." + (show)
@rlogan

Merry, thanks for your continued support!!!

We have a full service cancer treatment center here in town (Hope Regional Cancer Center), this is where Liz went to get her radiation treatments and where she will also go for her chemo. She is still ambulatory so we will be going to the center for her chemo treatments & immunotherapy every 3 weeks and if necessary for follow up radiation treatments.

Jump to this post

Yes, of course, I had forgotten. Ask the Cancer Center what they recommend as far as wigs go, also her hairdresser might have a line on some and the American Cancer Society (go online for contacts) have them for free.

You can call her Immersion person (you probably can get this from your Oncologist's office) and see if the chemo causes hair loss. I came within one minute of shaving my head. My friend and hairdresser came to my house and just before she plugged in her buzzer she asked me if I was sure that my chemo would cause hair loss. So I called the immersion office and spoke to my nurse and she said not always. Tada! And I had long hair at the time.

When I had chemo(2008) there wasn't any immunotherapy yet and chemo worked well for many many people so please don't be discouraged about her test results. There are many people who have yet had their results match up with an immunology medication. Researchers are working very hard to discover new results!

Lung cancer research and positive results have been more positive and saved so many more people within the last 5 years or more than most other cancers! And I consider mine chronic.

I hope that you get good news about wig availability and that if Liz needs one it will make her feel good. I had a couple of friends who had cancer when I did and they painted their heads! There are beautiful scarves and cute hats too.

These are just a few examples
https://www.headcovers.com/headwear/
https://www.tlcdirect.org/pages/headwear
https://www.tlcdirect.org/search?type=product&q=%20wigs*
wigs :
https://hatsscarvesandmore.com/
Good luck.

Merry
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