stage5guy's Journey with Adenocarcinoma, Lung Cancer

Patient: Lung Cancer > Non-Small Cell > Adenocarcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 6 years ago, Male, Age: 62, Stage IV, EGFR mutation positive: No

  1. 1
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    I started to have pain in my back in June 2011 after visiting a water park with my kids. I thought it was an injury and that I was experiencing Sciatica. I did massage, acupuncture etc. until I realized the pain was not going away. I went to an Orthopedic guy in Dec. 2011 and had an MRI. I had several large lesions on my spine and tailbone. I was at the oncologist the next day, went for a biopsy and found out I was stage 4 with mets. They told me my lung tumors were not operable.

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  2. 2
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    External radiation

    Radiation

    The radiation was for my bone lesions. It has effectively ended th pain I had in my back and kept me out of a wheel chair.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  3. 3
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I did 3 rounds od Taxol and Carbo, had horible drug inteactions, rashes, Neutropenia etc. and the disease progressed while I was doing Chemo. We had to practically threaten the Doc to do the ALK testing on my biopsy because he had never seen a case of it and was sure I was not ALK positive. Well guess what, I was and if we had not discovered it I would be in bad shape or gone by now. Never never quit being your own advocate, they can get complacent when you are labeled stage 4.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    2 Comments
  4. 4
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    Chemo wasn't working, discovered I was ALK Positive

    Decision Point

    I went to MD Anderson in Houston after this because the ALK re-arrangement is relatively rare and I wanted the security of a great regional cancer center.

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  5. 5
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    I am on Xalkori, a targeted gene therapy to block the ALK gene rearrrangement in my cancer. So far it is very effectve, cancer is arrested and shrinking.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 5 years ago
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    Blood Clot right upper extremity

    Oh No

    So back in the hospital, didn't see this coming. My friend told me early on not to let set backs or bumps in the road throw me off course. This is just another example of the truth of those words. Probably a consequence of the Port, but it has served me well so far. Let's see if they take it out. Anyway, a few more days and I will be back home if all goes well. Now to find out who will pick up the kids after school tomorrow. Should my partner take off work or save the days for a worse speed bump. So many people offering to help us. That feels good.

    1 Comment
  7. 7
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    over 4 years ago
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    Remission

    Celebration

    Remission is not the correct term for what I am experiencing I guess, but the Gene Therapy I am on for my ALK Gene Rearrrangement in my NSCLC Adeno has produced amazing results. My scans last month showed "complete metabolic response to treatment". I have been on the Xalkori for 11 months now and I am looking forward to more time because of this response. My Thoracic Onc at MD Anderson is very positive about my results and says she has many options for me if the cancer becomes resistant to the Xalkori. Fight on everyone as long as you can!

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  8. 8
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    over 4 years ago
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    Cancer is back/Recurred

    Oh No

    Well, after 1 year on Xalkori I have brain Mets. I was feeling little pinpoint headaches in various spots, some cognition symptoms etc. so I asked for a brain MRI. My last one was 9 months ago at MD Anderson and clean. I have 5, the largest being 3mm x 6mm x 9mm. I am going to do a PET scan tomorrow to make sure everything below the neck is still metabolically inactive. If so I will do WBR. If it is not, I will do stereostatic rad to the five and try to get back to ned below the neck and then do WBR. I have to say I am disappointed, I have responded so well to Xalkori and I have had a really wonderful year with a few speed bumps, but great year. I am sure this next phase will be challenging in some ways, but I am determined to find my way back to feeling good again and carrying on the fight. Does anyone know if I can go on to LDK/378 with brain Mets? I don't go to see my MDA onc until next week.

    1 Comment
  9. 9
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    Brain Mets on my May MRI. Stereotactic radiation and I will have to wait a few months to see how well it is working. XXX

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  10. 10
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    about 4 years ago
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    Previos Blood Clots upper right arm and now right leg.

    Side Effects

    This right leg is a big one and trying to control the swelling is difficult

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  11. 11
    • stage5guy
    • Experience with Adenocarcinoma, Lung...
    almost 3 years ago
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    Targeted therapy

    Drug or Chemo Therapy

    I lasted 31 months on Xalkori and I have now been on Zykadia (LDK) for 3 months. It looks like it is working, even on my brain mets. It is crossing the blood brain barrier. I am excited but cautious. This is a little harder to manage the side effects but I am grateful for th opportunity this new drug is providing. It is a 2nd generation ALK mutation blocker. Here we go!

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    3 Comments