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Rower Michelle

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Hello everyone,  My name is Michelle. I am 51 years old.   I was diagnosed with Stage 4 Lung Cancer about a month ago.  After spending the summer in and out of my PCP's office for a persistent cough, the thought was I had allergies.  As my cough worsened to atypical pneumonia, a very smart nurse ordered a CT scan that landed me in the hospital.   We were shocked.  I have never smoked, had no known risk factors. Tested the house for radon as well.  Fortunately, I have access to a National Cancer Institute at Kansas University.  This week the Foundation One analysis revealed I am ALK +.   I had one round of chemo and now will be transitioned to Alectinib.   I can say that we're still dealing with how suddenly this all happened.  My husband has been a wonderful source of support.  I'm glad to see that this resource is available and I hope to be able to make a positive contribution.   

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Hi Michelle and welcome here. I'm sorry to hear about your diagnosis  I can see how it would have been a shock. It sounds like your treatment is moving right along. I, too, have no known risk factors, except maybe second hand smoke.  I've learned that all that's necessary to have lung cancer is lungs.  Let us know if you have   questions and how we can support you.

Bridget O

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Hi Michelle,

I'm glad you found the forums, but not glad about your diagnosis :(  My experience with ALK and alectinib is minimal/non-existent - my mom is not ALK +, but I have heard people having great results from this drug!  There is a specific forum thread that is located under the NSCLC group for ALK+.  I am only suggesting this because there is a new-ish person who posted earlier in the month and some information about alectinib that you might find helpful.  Don't feel you have to post in that thread, I just wanted you to know it was there as a resource.  I look forward to hearing about how your cancer responds to alectinib! 

Take Care,

Steff

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Hi Steff, 

It's nice to meet you.  I did see the postings and felt very optimistic.  We are also looking into Integrative Medicine at KU and hope to find complementary approaches as we gear up.  I will share anything we learn.   Thank you for the warm welcome! 

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Hi Michelle,

I also did not have any risk factors and was diagnosed as Stage IV adenocarcinoma summer of 2017. I had my lower left lobe removed 9/17 and upper right removed 10/17, followed up by chemo. Sounds like you have a good plan in place. I was as shocked as you were when I found out that I had lung cancer. I hope all the treatments work for you!!

Let me know if you have any questions. I am not ALK+ but I've heard that the treatments have helped many!! 

Take care,

 

Ro

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Hi, Michelle, 

Welcome from me, too.  Sorry about what you're dealing with.  I was lucky enough to be very early stage, so needed only surgery.

Sounds like you're in good hands, though.  

Glad you found us--this is a great group.

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Hi, 

I am new as well. I went to the ER with what I thought might be pleurisy and a CT found 8 nodules ranging in size from 6mm to 21mm and 2 lymph nodes 12 mm. I was sent to MD Anderson and am scheduled for another CT and MRI. Doctor worried about brain stem involvement. I am hoping they are wrong and it is an infection.

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Hi Roz, 

Thank you so much for the outreach!  It's great to meet you!  I look forward to learning from the group.  I'm fortunate to have been a health care executive in my professional life.  My experience has left me well prepared to navigate the complexity of the healthcare system (particularly the private insurance).  Hopefully my prior insurance experience can be a resource.  

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Hi, Michelle,

Welcome to LCSC. I’m glad to see that you’ve already connected with several members and moderators. This community is a great place to find support, build connections, share your experience, and ask questions. Please post an update when you can and feel free to join in the conversations.

We are here for you,

Lauren

Digital Community Manager
LUNGevity Foundation

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