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Lori Quandahl

Stage IIIB Adenocarcinoma NSCLC with ALK+ Mutation

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Hi,

I would like to introduce myself.  My name is Lori Quandahl. 

I was diagnosed in March 2017 with Stage IIIB Adenocarcinoma NSCLC.  I have never been a smoker, been very active, and otherwise very healthy.  When tested for cancer the pathology report revieled that I had the ALK+ gene mutation.  I started out doctoring at Lacrosse Wisconsin - Gundersen Clinic, but did get a 2nd opinion at Mayo Clinic in Rochester Minnesota.  My husband and I chose to change health care providers to Mayo Clinic in July 2017.   My cancer started in the Right Lower Lobe of my lung and has spread to the lymph nodes in the chest region following the nodes pathway as far as the supraclavicular (collar bone) area on the right side and crossing over to that same region on the left side. 

Radiation was ruled out at the onset of my treatment due to the vast area which makes the risk to great.  So instead,  my treatment plan was to start on Xalkori (Crizotinib) May 2017 which is Targeted Therapy for ALK+ mutations.  My restaging visit July 20th showed significant reduction to the lymph nodes and the tumor located in the right lower lobe of my lung.  Today, July 31st,  we revisited Radiology to see if the reduction of the tumors would warrant starting treatment in the form of Radiation to try to kill this thing.  It was considered yet to be too risky, but we will have another consult again in 3 months.  We discussed Proton Therapy, which is a form of Radiation with pencil point precision.  This is newer technology that Mayo has on site and has been using with great results. Instead of damaging the good cells with the bad, Proton Therapy targets the bad cells leaving the good cells in tact. 

The plan as of today from my Oncologist is to have me change my TKI Medication over to Alenseca (Alectinib), which has been formulated to penetrate the blood brain barrier and prevent metastasis of the brain.  It is known to have lesser side affects than Xalkori and the results on this TKI have been very positive.

I am also a member in another group called "ALK I.E.S. Worldwide".  This group has a lot of great information and people in this group are involved in the Clinical Studies for some of the newest treatments coming out.

I wish everyone the best on their journey as we all strive for the same outcome!!!   A CURE!! 

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Hi, Lori, and welcome!

I'm fortunate enough to be early stage (there's still some debate about the pathology evidently, but appears to be 1a), so I have no experience to share re targeted therapy, but just wanted to welcome you and wish you the best with your course of treatment.  Sounds like you've got some promising strategies to call on--will look forward to hearing more good news!

Teri

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Hi Lori, Glad you found us.  I am a Stage 3 B survivor.  When I was diagnosed there was no talk of ALK. 

I am so happy when I continue to hear the fruit of new treatments.  I am here in Minnesota too.  I live just south of

the Twin Cities.  My Oncology Doctor  was a professor at the U of M.    Mayo is a great place to go for treatment.

I pray you respond to treatment as well as I did.   Please keep us posted on how it is going.

Donna G

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Lori, As noted in my profile,  I had a 4 cm tumor in my right upper lobe of lung in the apex of the lobe. It was pressing on nerves going down my arm and also on the

lining of my lung.  It was giving me chest pain and pain down my arm.  I had just moved back to Minnesota and I thought I had injured myself

during the packing and unpacking. I called the doctor and said I wanted an Ortho appointment.  They said " You are having chest pain, you are 50 yrs.

old ? You had better go to the ER right away. "  Well they did the EKG, blood tests, etc. but luckily  they also did a chest x-ray !   They saw the tumor.

I was referred to an Oncologist right away!   In just a couple of days I was started on chemo and daily radiation .  Eventually I had that lobe of lung removed

and after recovery more chemo. If you go to      " Share Your Lung Cancer Story  "    I entered my story there on July 3 , 2004.   It is called

" Through the Valley to the Mountain."

Donna G

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Hi, Lori,

Welcome to LCSC. We are glad you've joined this community. I hope that here, like in the ALKies group, you can make many meaningful connections and find both hope and helpful information. Please feel free to explore the discussion boards and join in on the conversations. We also have member blogs that you can check out. I would be happy to provide you with educational resources or information about LUNGevity's support programs, should you desire them. Please continue to post updates. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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