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 | Mar 19, 2022
In reply to @rlogan "Merry, Thanks for checking. The biopsy of her lymph node went as expected and we should..." + (show)
@rlogan

Merry, Thanks for checking.

The biopsy of her lymph node went as expected and we should get the results Monday when we meet with the Oncologist. Liz also had a MediPort inserted for future chemo treatments. She is fine, still ambulatory and at home.

After her lung embolism last weekend she is on oxygen and now has a physical therapist and hospice checkup service that will be coming by about once a week to check on her and give her tips on handling the chemo and radiation treatments. Looking forward to getting her treatment started and possibly slowing the growth of the cancer. Fingers crossed.....

BTW... checked on the steriod frequency and you were right on the money with every 6 hrs that she is normally awake...

Jump to this post

Morning, Bob-It sounds as if you had a productive day, accomplishing all the steps that need to take place prior to treatments. There are some wonderful services out there and I'm glad that you are taking advantage of them. Hospice is incredible and will ensure Liz's comfort. You can ask them anything and they will bend over backward to help!

I don't know why pharmacists (probably insurance co's as well) don't put when you should take medications...it's so easy to mistake directions. At least it was for only a few nights! Now you can get some good rest, I hope.

Please extend my best to Liz and please take care of yourself. It was a big day yesterday and I bet you both need some well-earned rest!

I'm here if you need a prop, shoulder, or anything. I hope that you will take advantage of this!

REPLY
pstut | @pstut | Mar 19, 2022
In reply to @rlogan "First of all we want to thank everyone for their positive comments and support!! We plan..." + (show)
@rlogan

First of all we want to thank everyone for their positive comments and support!! We plan on using this forum as my/our diary of experiences on our journey in hopes that someday another confused and/or scared individual can see what has happened to someone else and the progression of the disease and treatment. I will try to provide updates as they become available......

Based on reading other's experience, I decided to be my wife's advocate in all matters and did not wait for information to come to me. Rather I contacted everyone we expected to hear from today, as soon as I could reach them. I called Mayo-JAX appt center at 7:01 AM, our local doctor as soon as they opened and followed through getting the contact information for each referral and contacting these offices before they had a chance to contact me. I feel certain that this helped move some things along, as compared to waiting for each office to let us know when they could see us.

We were able to contact the Mayo Appt Center this morning and completed our registration. I was informed that an actual appoint could not be made until my wife had biopsy results - so that the correct and necessary Mayo team could be assembled for the appointment.

We made contact with a local Oncologist and have our first appt this Wednesday. We expect to get a date for her biopsy during our appointment. She will also be seeing her Cardiologist (previously scheduled) on Wednesday. The Cardiologist was been informed of her cancer diagnosis and fluid around the heart sac.

We also got her PET-CT scan scheduled for this Thursday locally.

I think that we are starting to get some direction and can only hope that corrective actions continue to move along at a steady, if not rapid pace in the right direction. We will not really know anything new until late this week.

Jump to this post

Great job being proactive. I took care of my mom and that is what I learned. Speak up and make sure you have a great list of questions and a journal for doctor’s appointments. Praying for your wife and your family🙏🏼

REPLY
Merry, Alumni Mentor | @merpreb | Mar 20, 2022

Bob- Two pairs of eyes are better than one, so if you need additional support as a caretaker you might want to at least glance at Connect's caretaker support group
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=24#comment-112259
Enjoy your Sunday. Merry

REPLY
1 reply
rlogan | @rlogan | Mar 23, 2022
In reply to @merpreb "Bob- Two pairs of eyes are better than one, so if you need additional support as..." + (show)
@merpreb

Bob- Two pairs of eyes are better than one, so if you need additional support as a caretaker you might want to at least glance at Connect's caretaker support group
https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/?pg=24#comment-112259
Enjoy your Sunday. Merry

Jump to this post

Thanks Merry, Liz has a physical therapist and a nurse who checks up on her once a week.

The biopsy confirmed Non-Small Cell Lung Cancer and they will be going after the lesions in her brain first with 2 weeks of radiation treatment and then the cancer in the remaining organs with chemo. The oncologist will be DNA/Genome testing the cancer to see if Liz qualifies for targeted treatment versus generic chemo. We have been waiting on Insurance approval since Monday to start the treatments and I will be calling the insurance company tomorrow to see what the hold up has been....... Should be a no-brainer......

REPLY
2 replies
Merry, Alumni Mentor | @merpreb | Mar 24, 2022
In reply to @rlogan "Thanks Merry, Liz has a physical therapist and a nurse who checks up on her once..." + (show)
@rlogan

Thanks Merry, Liz has a physical therapist and a nurse who checks up on her once a week.

The biopsy confirmed Non-Small Cell Lung Cancer and they will be going after the lesions in her brain first with 2 weeks of radiation treatment and then the cancer in the remaining organs with chemo. The oncologist will be DNA/Genome testing the cancer to see if Liz qualifies for targeted treatment versus generic chemo. We have been waiting on Insurance approval since Monday to start the treatments and I will be calling the insurance company tomorrow to see what the hold up has been....... Should be a no-brainer......

Jump to this post

Good morning. Ah, an answer! And a way forward. Does this preclude other cancers (pancreatic)? My fingers are crossed that you learn that her treatments are approved when you call.

How is Liz feeling? How are her spirits?

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 24, 2022
In reply to @rlogan "Thanks Merry, Liz has a physical therapist and a nurse who checks up on her once..." + (show)
@rlogan

Thanks Merry, Liz has a physical therapist and a nurse who checks up on her once a week.

The biopsy confirmed Non-Small Cell Lung Cancer and they will be going after the lesions in her brain first with 2 weeks of radiation treatment and then the cancer in the remaining organs with chemo. The oncologist will be DNA/Genome testing the cancer to see if Liz qualifies for targeted treatment versus generic chemo. We have been waiting on Insurance approval since Monday to start the treatments and I will be calling the insurance company tomorrow to see what the hold up has been....... Should be a no-brainer......

Jump to this post

I’m glad to hear that things are moving along, and that at least you know some of what to expect. Is there a time line for the DNA/biomarker test results? The sooner the better, as a targeted therapy can really be a game changer. Take care!, Lisa

REPLY
1 reply
rlogan | @rlogan | Mar 24, 2022
In reply to @merpreb "Good morning. Ah, an answer! And a way forward. Does this preclude other cancers (pancreatic)? My..." + (show)
@merpreb

Good morning. Ah, an answer! And a way forward. Does this preclude other cancers (pancreatic)? My fingers are crossed that you learn that her treatments are approved when you call.

How is Liz feeling? How are her spirits?

Jump to this post

Liz's spirits are good and her appetite has been better since she started the steroids'. Unfortunately our insurance provider uses a third party to determine whether certain procedures are necessary (PET Scan, Radiation Treatment) and they have been in disagreement with the 3rd party on who will make the call on Liz's radiation treatment since Monday. In a nutshell, we have lost this week to bureaucratic B.S. and are hoping an approval to treat will be made NEXT Monday. If the Radiologist gets the approval Monday, Liz will begin treatment next Wednesday.

REPLY
rlogan | @rlogan | Mar 24, 2022
In reply to @lls8000 "I’m glad to hear that things are moving along, and that at least you know some..." + (show)
@lls8000

I’m glad to hear that things are moving along, and that at least you know some of what to expect. Is there a time line for the DNA/biomarker test results? The sooner the better, as a targeted therapy can really be a game changer. Take care!, Lisa

Jump to this post

They will be doing the DNA/Biomarker testing during the two weeks of initial radiation treatment for her brain lesions. The Oncologist told us that interestingly people from the South do not generally have DNA specific NSCLC whereas folks from the east/west coast generally do. Have not researched this, but he also said that this will not prevent him from ordering the Garden 360 and other DNA tests anyway.....

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Mar 25, 2022
In reply to @rlogan "They will be doing the DNA/Biomarker testing during the two weeks of initial radiation treatment for..." + (show)
@rlogan

They will be doing the DNA/Biomarker testing during the two weeks of initial radiation treatment for her brain lesions. The Oncologist told us that interestingly people from the South do not generally have DNA specific NSCLC whereas folks from the east/west coast generally do. Have not researched this, but he also said that this will not prevent him from ordering the Garden 360 and other DNA tests anyway.....

Jump to this post

Bob- I would love to hear what resource this information came from about DNA/biomarker specific for NSCLC being divided by sections of the country. With so much mobility how could anyone have tested this to date? I couldn't find such a fact on Snopes or Wikipedia.

Does this even make any sense to you?

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Mar 25, 2022
In reply to @merpreb "Bob- I would love to hear what resource this information came from about DNA/biomarker specific for..." + (show)
@merpreb

Bob- I would love to hear what resource this information came from about DNA/biomarker specific for NSCLC being divided by sections of the country. With so much mobility how could anyone have tested this to date? I couldn't find such a fact on Snopes or Wikipedia.

Does this even make any sense to you?

Jump to this post

In my completely non-scientific observations, this isn’t the case. I’m glad the oncologist has ordered the biomarker test, it really is standard of care in the US although insurance companies like to deny claims for that too. It should be done as soon as possible, weeks ago in my opinion.
Diagnosis is such a difficult time for patients and caregivers! It’s completely consuming and while it may not seem like it, it does get easier, hang in there. Thinking of you and Liz, and I’m glad she’s starting to feel a bit better.

REPLY
View MoreView Less
Please sign in or register to post a reply.