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New here: Looking for others who have NSCLC and information

Posted by harley123 @harley123, Apr 24, 2022

Hi my name is Tom and I was just diagnosed with NSCLC thay found a large tumor in My right lung besides the shortness of breath and pain in my right shoulder I would never known anything serious was wrong when I went to the doctor about my shoulder that's when thay found the tumor I had all the test PET, MRI, Cat scan, ets. The plan is Immunotherapy but thay needed DNA so in the meantime thay are going to put me on Chemo. If anyone could let me know what to expect iam at a loss and don't know anything about the disease and anything would be a help.
Thank You
Tom

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richcolleen | @richcolleen | Apr 27, 2023
In reply to @richcolleen "Good evening Tom. My name is Colleen and I also had same symptoms as you except..." + (show)
@richcolleen

Good evening Tom. My name is Colleen and I also had same symptoms as you except had some back pain also nothing out of ordinary. Ran out of breath climbing stairs. Went to Dr same day and was told I had aggressive NSCLC and could not get into Coborns cancer center in town here so called Mayo. Got appointments for 4 days and got the news it was stage 4 NSCLC which had metastasize to stomach and kidneys. Surgery and radiation was ruled out and chemo was my only hope. Started 4 kinds same week but after 7 months I had enough so I said I’m done. They than started me on keytruda for 2 years. Had to quit as ended up with cdiff , inflamed joints and kidneys were only working at 28%. Drank 60-70 oz water daily for 3 months and know working good cdiff cleared up and Inflammation is only thing I’m dealing with and take prednisone for that. Tumor, nodules, and cells have all shrunk.
Lots of prayers came my way and God gave me more years than they expected but one Dr at Mayo said God is in control and He is. Good luck and check in with this great group.

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Felt the hug. Thank you!

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 27, 2023
In reply to @richcolleen "Felt the hug. Thank you!" + (show)
@richcolleen

Felt the hug. Thank you!

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How are doing, @richcolleen?

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richcolleen | @richcolleen | Apr 28, 2023
In reply to @colleenyoung "How are doing, @richcolleen?" + (show)
@colleenyoung

How are doing, @richcolleen?

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Thank you!
Rough winter but am doing good. Getting strength back. Can walk almost a mile. Chemo and keytruda did a number on my bones. November I broke my fifth vertebrae which need cement
If I twist wrong or bend wrong is how I’ve been breaking them. Ten days later taking a shower bent over and broke two more and both had to be cemented. Needed live in care 24-7 for 4 1/2 months. Was taught or should say trained to bend correctly. Limited lifting 5lbs or less only. Another change but keeps me on my toes.
Hopefully you’re doing well! Colleen

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1 reply
confident | @confident | Apr 28, 2023
In reply to @lls8000 "There are always a lot of questions throughout the process of diagnosis and treatment, that’s normal...." + (show)
@lls8000

There are always a lot of questions throughout the process of diagnosis and treatment, that’s normal. Be sure to keep asking your doctors until you understand. It’s normal to feel overwhelmed, it all happens so fast and is generally so very unexpected. I hate that we see so many new people diagnosed!
Ask about the stage, it is important in determining the treatment, and can be important for certain benefits later.
It’s good that they are waiting for the DNA/biomarker testing prior to treating with immunotherapy, it is not effective for all types of lung cancer, and the biomarker testing will confirm that the selected treatment is a good match at the cellular level. The chemo should help with some of the symptoms, but some docs will hold chemo until the biomarker tests are back too, but only if you can tolerate the symptoms that you are experiencing.
I kept a list of questions on the notepad section of my phone, so as things popped into my head I could ‘write’ them down and then I wouldn’t forget. I could also put that particular question out of my mind then.
I was diagnosed 2 years ago, stage IV, and I lead a fairly normal life today. I know that my clock is ticking, but I try to do the best to enjoy my time.
Take care!, there is real hope in the realm of lung cancer, we’ve come a long way with new treatments!

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For what it's worth, EVERYONE'S clock is ticking, but as long as we're still "on this side of the grass", we can always find something everyday to be thankful for 🙂

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 30, 2023
In reply to @richcolleen "Thank you! Rough winter but am doing good. Getting strength back. Can walk almost a mile...." + (show)
@richcolleen

Thank you!
Rough winter but am doing good. Getting strength back. Can walk almost a mile. Chemo and keytruda did a number on my bones. November I broke my fifth vertebrae which need cement
If I twist wrong or bend wrong is how I’ve been breaking them. Ten days later taking a shower bent over and broke two more and both had to be cemented. Needed live in care 24-7 for 4 1/2 months. Was taught or should say trained to bend correctly. Limited lifting 5lbs or less only. Another change but keeps me on my toes.
Hopefully you’re doing well! Colleen

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Ouch! You must have to be very deliberate about your movements now. Did you work with an occupational therapist to learn how to bend correctly? Did they come to your home to help assess the positioning of common actions in the house, i.e., getting out of bed?

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richcolleen | @richcolleen | Apr 30, 2023

OT, PT and Nurse came every week between 5-6 weeks. It’s a new and challenging journey again but feel I’m doing good. Have to see Endocrinologist but in St Cloud they are booked till Sept 13th is when I can get in. Primary Dr is having be take Pro Bonantill than to strengthen my bones.
Alls good!
Colleen

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nsclckrasg12v | @nsclckrasg12v | Aug 23, 2023
In reply to @nsclckrasg12v "Hi anyone with early stage NSCLC with Kras G12V?" + (show)
@nsclckrasg12v

Hi anyone with early stage NSCLC with Kras G12V?

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There’s a G12V Kras Kickers Facebook group

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Aug 23, 2023
In reply to @nsclckrasg12v "There’s a G12V Kras Kickers Facebook group" + (show)
@nsclckrasg12v

There’s a G12V Kras Kickers Facebook group

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@nsclckrasg12v, I belong to the ALK Positive Facebook group. It's very helpful, especially for questions related to ALK specific treatments. I'm glad you found a similar group for KRAS!

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richcolleen | @richcolleen | Aug 23, 2023
In reply to @richcolleen "Felt the hug. Thank you!" + (show)
@richcolleen

Felt the hug. Thank you!

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Hope you felt my hug back.

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donnadeno | @donnadeno | Sep 26, 2023

2 weeks post op. R upper lobe 2 malignant nodules and a section of lung removed. I see the surgeon tomorrow for diagnosis. I do know it was NSC. Today I’m having mid chest pain all day.

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