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.

dedehans | @dedehans | Apr 14, 2022
In reply to @merpreb "Yes, of course, I had forgotten. Ask the Cancer Center what they recommend as far as..." + (show)
@merpreb

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

Jump to this post

Hi Merry...I did not lose my hair but I had my wigs just in case as hair loss was definitely a possibility. Having them gave me a feeling of preparedness and power over the beast. I still have them....

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Apr 14, 2022
In reply to @dedehans "Hi Merry...I did not lose my hair but I had my wigs just in case as..." + (show)
@dedehans

Hi Merry...I did not lose my hair but I had my wigs just in case as hair loss was definitely a possibility. Having them gave me a feeling of preparedness and power over the beast. I still have them....

Jump to this post

Good morning Dee! I never gave it another thought after I was told that I might not lose my hair. Pretty brazen, eh? I did lose some hair but not enough that I paid any attention to it. Every day I woke up, showered, and made sure no matter how tired I was I put makeup on. As you can see in my photo my hair looks like it needed some attention and the makeup I had on that day had worn away. It was my very last day of chemo!

The gal next to me was my partner in crime! My immersion room was huge with a ton of people in it and it became very lively. The nurses had all worked together for 10 years and were crazy! We had one guy who was a very loud man, very obnoxious, butting in on all conversations so his nurse finally shut him up with a good dose of a relaxant of some kind! lol.

They held science quizzes and health quizzes and people brought games and shared everything! Lunch was from a nearby deli at no cost.

I don't think that this could happen in today's world but it sure was an incredible experience, one that I cherish and will always cherish. haha

REPLY
1 reply
dedehans | @dedehans | Apr 14, 2022
In reply to @merpreb "Good morning Dee! I never gave it another thought after I was told that I might..." + (show)
@merpreb

Good morning Dee! I never gave it another thought after I was told that I might not lose my hair. Pretty brazen, eh? I did lose some hair but not enough that I paid any attention to it. Every day I woke up, showered, and made sure no matter how tired I was I put makeup on. As you can see in my photo my hair looks like it needed some attention and the makeup I had on that day had worn away. It was my very last day of chemo!

The gal next to me was my partner in crime! My immersion room was huge with a ton of people in it and it became very lively. The nurses had all worked together for 10 years and were crazy! We had one guy who was a very loud man, very obnoxious, butting in on all conversations so his nurse finally shut him up with a good dose of a relaxant of some kind! lol.

They held science quizzes and health quizzes and people brought games and shared everything! Lunch was from a nearby deli at no cost.

I don't think that this could happen in today's world but it sure was an incredible experience, one that I cherish and will always cherish. haha

Jump to this post

Merry you look great! I love your story about how you dealt with the chemo back then. In todays immersion rooms people are all glued to their PDAs , headsets in place so conversation at a minimal unless requesting something....:-(

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Apr 14, 2022
In reply to @dedehans "Merry you look great! I love your story about how you dealt with the chemo back..." + (show)
@dedehans

Merry you look great! I love your story about how you dealt with the chemo back then. In todays immersion rooms people are all glued to their PDAs , headsets in place so conversation at a minimal unless requesting something....:-(

Jump to this post

Dee- Look great? I was as white as a sheet! All my numbers were down and they cut the infusion to a quarter. But thanks! A lot of people had video players and were quiet. And with Covid some places keep patients separated! I'm nosy so I look around a lot. I can't even read in a doctor's office! haha

REPLY
1 reply
dedehans | @dedehans | Apr 14, 2022
In reply to @merpreb "Dee- Look great? I was as white as a sheet! All my numbers were down and..." + (show)
@merpreb

Dee- Look great? I was as white as a sheet! All my numbers were down and they cut the infusion to a quarter. But thanks! A lot of people had video players and were quiet. And with Covid some places keep patients separated! I'm nosy so I look around a lot. I can't even read in a doctor's office! haha

Jump to this post

What are you talking about? You look just fine in your not full length portrait ;-). You have a nice smile, pretty eyes good hair....

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Apr 14, 2022
In reply to @dedehans "What are you talking about? You look just fine in your not full length portrait ;-)...." + (show)
@dedehans

What are you talking about? You look just fine in your not full length portrait ;-). You have a nice smile, pretty eyes good hair....

Jump to this post

Do you
Mean my Connect photo?

REPLY
1 reply
rlogan | @rlogan | Apr 14, 2022
In reply to @merpreb "Yes, of course, I had forgotten. Ask the Cancer Center what they recommend as far as..." + (show)
@merpreb

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

Jump to this post

Merry - thanks for the info!!! Liz told me she had planned to use scarfs, if necessary, all along.... She cut her hair pretty short before any of this started and she has not seen any loss as a result of the radiation treatments to her skull area. We will meet her immersion person next Thursday at the Cancer Treatment Center for her first Xgeva & B-12 injections.

REPLY
dedehans | @dedehans | Apr 15, 2022
In reply to @merpreb "Do you Mean my Connect photo?" + (show)
@merpreb

Do you
Mean my Connect photo?

Jump to this post

Yes. The one in the circle I am looking at! You are very pretty!

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Apr 15, 2022
In reply to @dedehans "Yes. The one in the circle I am looking at! You are very pretty!" + (show)
@dedehans

Yes. The one in the circle I am looking at! You are very pretty!

Jump to this post

Aww, thank you very much for your unexpected compliment!

REPLY
rlogan | @rlogan | Apr 23, 2022

Well. Liz had a pretty rough week. She had a bone scan on her hips and upper legs and a follow up chest scan. The results show that the cancer has spread extensively through her bones and her left lung has collapsed. She started taking calcium and vitamin D supplements along with receiving an Xgeva treatment to try to increase her bone density.

Pain management has been the biggest challenge for the past two weeks, She was in constant pain and stopped eating and exercising as a result. She was placed on morphine tabs twice a day and this seems to have helped reduce the pain tremendously. She had breakfast this morning for the first time in two weeks.

She is scheduled to start chemo next Tuesday and it looks like radiation treatments will begin on her hip area in between the chemo treatments. We will know more in two weeks after her chemo and we meet again with her radiologist.

REPLY
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