1. < Lung Cancer

Celebrating 25 years of lung cancer

Posted by Merry, Alumni Mentor @merpreb, Sep 25, 2022

Hello to all of you.

I think that a lot of you know my story. I was diagnosed with lung cancer 25 years ago. My first cancer was a different type of lung cancer that I have now. It was a single NSCLC lesion that grew very quickly.

My second lung cancer was 10 years later and it was called multifocal adenocarcinoma lung cancer. Briefly, it is an NSCLC but grows at a very very slow pace and there can be more than one lesion at a time and/or in more than one lobe at a time.

A week from now I will be going to Mass General Hospital to be treated for my 6th lung cancer. It includes 2 lesions and one is very close to my heart. I will be treated with SBRT- a type of targeted radiation that is a lifesaver for people who can not have more surgery. With multifocal adenocarcinomas, each lesion begins as ground glass and is not considered a metastasis but a primary lesion.

On October 3rd I will also be celebrating my 25th anniversary of lung cancer. I started a blog. You will see a 5-year absence from writing due to my time mentoring for Mayo and Covid and other life interruptions. But it is time to return now and to do both-mentor for Mayo and write.

You will automatically get a notice of a new post if you sign up.
My blog is https://my20yearscancer.com/

I will have approximately 40 minutes of radiation a day for 5 days. I worked out a schedule with my radiologist that is best for me. I selected 5 straight days so I wouldn't have to go back and forth from my state to MA.

I feel that in being the Mentor for this brave and wonderful group I also need to share my journey. I don't know if these will be my last lesions or if there will be more. I hope that you will come along with me as I fight my 6th battle with Lung Cancer.

Thank you
Merry

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

franciekid | @franciekid | Feb 28, 2023
In reply to @merpreb "franciekid- The internet is a two-edged sword. Maybe, just maybe wait until after your biopsy and..." + (show)
@merpreb

franciekid- The internet is a two-edged sword. Maybe, just maybe wait until after your biopsy and your talk with your doctor to decide about your life. You can just drive yourself nuts by doing what you are doing. Take a break. Watch movies instead. There is nothing that you can do until the biopsy so stay healthy until then by remaining in the here and now. I don't think that you have enough information to make any informed decisions at this point.

When and if the time comes to make life decisions you will make the right one for you. I guarantee it. But right now you have a lesion that needs to be biopsied and that is all. Most people select quality over quantity, or cancer itself makes that decision. But it's way too early for you too.

Yes, there are people in this group who have had lung cancer metastasized to their brain, but also to every other part of their bodies too. Do you really want people to tell you?

Prior to my confirmed cancer news, I enjoyed a glass or two of wine at night. Have you tried this or something else that you like to drink, eat or smoke? ('im thinking of CBD or medical pot)?

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Thank you for your wise advice. I have to work on not projecting ahead when I do not have the hard facts. Helpful reminder.

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2 replies
Merry, Alumni Mentor | @merpreb | Feb 28, 2023
In reply to @franciekid "Thank you for your wise advice. I have to work on not projecting ahead when I..." + (show)
@franciekid

Thank you for your wise advice. I have to work on not projecting ahead when I do not have the hard facts. Helpful reminder.

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I think that we all do.

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1 reply
kmeikle1 | @kmeikle1 | Feb 28, 2023
In reply to @franciekid "Merry, do you anyone in this group who has lung cancer that has metastasized to the..." + (show)
@franciekid

Merry, do you anyone in this group who has lung cancer that has metastasized to the brain?

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Hi there. I have Stage 4 lung cancer that metastasized to the brain and the spine. Currently receiving radiation and chemo.

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2 replies
franciekid | @franciekid | Feb 28, 2023
In reply to @kmeikle1 "Hi there. I have Stage 4 lung cancer that metastasized to the brain and the spine...." + (show)
@kmeikle1

Hi there. I have Stage 4 lung cancer that metastasized to the brain and the spine. Currently receiving radiation and chemo.

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Wishing you a positive outcome.

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lmd1 | @lmd1 | Mar 1, 2023
In reply to @franciekid "Merry, do you anyone in this group who has lung cancer that has metastasized to the..." + (show)
@franciekid

Merry, do you anyone in this group who has lung cancer that has metastasized to the brain?

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I was diagnosed in October with stage IV lung cancer that had metastasized to the brain. One large tumor surgically removed and then had three rounds of targeted radiation therapy to brain. (2 small tumors that could not be surgically removed).

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1 reply
franciekid | @franciekid | Mar 1, 2023
In reply to @lmd1 "I was diagnosed in October with stage IV lung cancer that had metastasized to the brain...." + (show)
@lmd1

I was diagnosed in October with stage IV lung cancer that had metastasized to the brain. One large tumor surgically removed and then had three rounds of targeted radiation therapy to brain. (2 small tumors that could not be surgically removed).

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I’m so sorry to hear this. How is your life between treatments?

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lmd1 | @lmd1 | Mar 1, 2023
In reply to @franciekid "I’m so sorry to hear this. How is your life between treatments?" + (show)
@franciekid

I’m so sorry to hear this. How is your life between treatments?

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I got really sick after the last radiation treatment. Now I am feeling good: I am currently taking Tagrisso and have little to no side effects. Going for new scans at the end of the month. Praying all looks good.
How are you doing?

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1 reply
Merry, Alumni Mentor | @merpreb | Mar 2, 2023
In reply to @kmeikle1 "Hi there. I have Stage 4 lung cancer that metastasized to the brain and the spine...." + (show)
@kmeikle1

Hi there. I have Stage 4 lung cancer that metastasized to the brain and the spine. Currently receiving radiation and chemo.

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Good morning and welcome to Mayo Connect. You've come to the right place for support and understanding.

It looks as if you've been through a lot! Will you tell me more about your story? How are you feeling?

Merry

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1 reply
kmeikle1 | @kmeikle1 | Mar 2, 2023
In reply to @merpreb "Good morning and welcome to Mayo Connect. You've come to the right place for support and..." + (show)
@merpreb

Good morning and welcome to Mayo Connect. You've come to the right place for support and understanding.

It looks as if you've been through a lot! Will you tell me more about your story? How are you feeling?

Merry

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@merpreb Hi Merry. Here's some of my story (thanks for asking): I was supposed to have my bone on bone hip replaced in September of 2022. I had been coughing a lot for a month (with some coughing fits) and I was concerned that I had bronchitis and that my hip replacement would be postponed. That's the only reason I went to the doctor. Scans showed a 8 cm. tumor in my lung (NSCLC Adenocarcinoma) that had metastasized to my spine and brain. I had surgery to remove the brain tumor that went well. I've since had 36 rounds of radiation and 6 rounds of chemo with modest improvement. Now I'm undergoing 3 rounds of SBRT radiation on my spine (T6 and T9) and 3 on my brain. I'll do two more rounds of chemo (another type) and then I think that's it. I'm not a good candidate for immunotherapy.
I feel okay. I'm thankful for over 70 years of good health. Some days are better than others, but my pain is managed well with pain meds. I can't drive between pain meds and brain surgery, and I can't walk much due to my hips. That does limit my quality of life, but again I'm thankful for what I've got. As I sit here and type, I have no pain. When I get up to walk it's a different story. There is no cure for what I have, so I have to weigh the cost/benefit of continuing treatment.
Thank you for the work you do to support our discussion group. Kathy

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franciekid | @franciekid | Mar 2, 2023
In reply to @lmd1 "I got really sick after the last radiation treatment. Now I am feeling good: I am..." + (show)
@lmd1

I got really sick after the last radiation treatment. Now I am feeling good: I am currently taking Tagrisso and have little to no side effects. Going for new scans at the end of the month. Praying all looks good.
How are you doing?

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I’m at the very beginning of this journey. Nodule almost 100% certain to be cancer discovered accidentally Friday. PET scan scheduled for Monday to determine metastases. Then a plan. The uncertainty is what’s hard.

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