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.

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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.

dianemb | @dianemb | Aug 17, 2023

God bless you as you continue your journey. Thank you for sharing your experiences.
I very much appreciate your writing.

yellowstonelady | @yellowstonelady | Aug 17, 2023

I had 7 weeks of broad field daily radiation to my chest in 2000 after my first lung cancer diagnosis. I started concurrent chemo and radiation right after they removed most of my right lung. My tumor was 10-12 cm. I was age 46 with no other health problems.

Radiation starts off very easy but by around the 4th week I could tell I was getting weaker. I started to really drag by the 7th week. I was having chemo once a week on Fridays at that time too. Treatment was like a hike that just kept getting steeper and steeper until the 7th week the trail become so steep and I had no power left. It drained my batteries right down to zero like kryptonite does to superman.

Then it took a year or so to feel back to full power. Radiation is funny stuff, it keeps working/smoldering after the treatments end.

I remember having trouble eating some of my favorite foods during treatment beginning about week 4. My throat got more and more sensitive. So no acidic foods like pizza, oranges, cranberries, grapes, tomatoes, colas, and no scratchy food like raw veggies, corn chips, french fries, or tacos. Mostly I ate soft creamy food like ice cream, milkshakes, creamy soups, cheesy pasta and mashed potatoes. You'd be amazed how much you want a cola and pizza when you know you can't have it!

So I don't know which I would pick if I were you. But you will most likely not be able to eat what you want, and you will most likely feel very drained by the radiation for some time after treatment ends. The sun burn wasn't bad for me, just slightly red skin...but I imagine it could be bothersome sleeping if it is on your back.

I wish you all the best on this journey. Barb

mef | @mef | Aug 18, 2023

Hello there LC Warrior! You give us all hope and thank you for that. I am so glad you described all that you’ve been through it’s so informative. You are truly brave. How do you keep your spirits us through all that you’re experiencing?

Lisa, Volunteer Mentor | @lls8000 | Aug 18, 2023

In reply to @soupycampbell "Yes and no. That was the only name I got for the bigger one. They did..." + (show)

@soupycampbell, I love the picture! Your bright spirit really shines through, all with such class.
I'm sorry to hear that you are dealing with this, but I am glad that you've had some time to travel and enjoy your life. You've had time to think about these decisions, but I'm sure we're never really ready when the decisions present themselves. I hope you can get more info on the treatment side effects vs. prognosis, that will help to make things clearer. It won't be an easy decision. Be sure to ask your doctors if the trips that you have coming up are safe for you, and then weigh that information too. Please continue to let us know how you are doing. Hugs!
I'm tagging a few others that I believe have had recent lung related radiation; @donnatownsend, @vlpr.

Merry, Alumni Mentor | @merpreb | Aug 19, 2023

In reply to @dianemb "God bless you as you continue your journey. Thank you for sharing your experiences. I very..." + (show)

Thank you. I appreciate this.

Merry, Alumni Mentor | @merpreb | Aug 19, 2023

In reply to @mef "Hello there LC Warrior! You give us all hope and thank you for that. I am..." + (show)

@mef
I'm not sure who you are addressing this to. Would you please add a name before you post? Our group has increased so much that using names would help!

Thank you

Merry, Alumni Mentor | @merpreb | Aug 19, 2023

In reply to @soupycampbell "Yes and no. That was the only name I got for the bigger one. They did..." + (show)

Soupy- I her you, Soupy. But taking painkillers doesn't mean you won't have a quality life. It could increase it. And this is the case whether you chose radiation or without it. I pull out all the stops when I want a clear answer to something. My eyes swell and tears drip down my face.." but if I have, go..how can I enjoy it?"

Can you have radiation when you are back from traveling? How much time is there in between the trips?

soupycampbell | @soupycampbell | Aug 19, 2023

In reply to @merpreb "Soupy- I her you, Soupy. But taking painkillers doesn't mean you won't have a quality life...." + (show)

I have since talked to my family Dr and I had pretty much decided not to get it but we decided together to get the 5 weeks of a lower dose and try it and if any problems stop it. Also, a couple of questions. I’m at the moment in bed yet watching the news and I all of a sudden was doubled over with pain in my chest. I stayed sitting like that for a few minutes and it got less and less painful and can now breath fully. Also wondering if anyone has a dog that they had with them when they passed. I want to have mine with me as she doesn’t want to leave my side and I’ve been told if they’re with you they will know when you’ve passed and be ok to leave. My granddaughter will take her. I have set up for Medical Assisted Death which I should and hope I can do at home. Obviously I love my dog but I’ve been on my own for many years and have had this one for 5 years which has kept me moving and healthy.
I truly appreciate your input.
Joan

soupycampbell | @soupycampbell | Aug 19, 2023

In reply to @lls8000 "@soupycampbell, I love the picture! Your bright spirit really shines through, all with such class. I'm..." + (show)

Thank you. You will probably see another reply I answered this morning so won’t repeat. Message me if you don’t. My Dr. says travel as much as you can while you can! But, I just had an incident this morning that is giving me doubts but will get more info. I all of a sudden was doubled over with chest pain and bad pain! It didn’t last long thank goodness probably only a few minutes but scary.