• stage5guy's Avatar

    stage5guy posted an update

    So the last couple of months have been difficult. I feel like I am playing Wack-a-mole with symptoms and complications from medicine and cancer. The hardest has been brain lesions developing and trying to beat them back. I had stereotactic radiation to 5 mets 3 months ago. Between docs in Houston and Austin I am still not clear how successful it has been and they have been less than stellar in their performance with the MRI data. I will know more in September at the next set of scans. I have the start of necrotic jaw from Zomeda and Xgeva and I am supposed to schedule a CT scan of my jaw, a recent new blood clot in my leg and gynocomastia in my pectorals. My Coumadin level is tricky because I two medications that affect it in opposite directions. My WBC dropped very low and I had to go off my ALK Blocker meds (read magic pills) till my neutropenia subsided. I have headaches now.
    I am leaving on a 2 week trip Friday and feeling uncertain about being away from my docs, but I have two kids, 8 and 9 years old and they are thrilled about going on vacation. I am starting back on my normal meds tomorrow so I hope this wonderful body of mine can power these changes for this trip and let me make some great memories with the kids and my spouse. I know there are more good days ahead of me and I intend to get through this XXX so I can get those good days. I love my life.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Sorry you're having a tough go of it, and yes, the symptoms are as hard to deal with as the cancer itself. Hope you can hang tough and beat it down. You will start to feel better fairly quickly once you're done with everything.

      about 8 years ago
  • stage5guy's Avatar

    stage5guy posted an update

    I was diagnosed in December 2011. I have been through Radiation, Chemo (which was not effective) and I am now on an oral ALK gene blocker twice a day every day. I am stage 4 NSCLC. I call my world the "new normal", borrowed from someone else of course. I am 57 years old and have a wonderful spouse and 2 kids, 7 and 9. They do make me very tired, but their sweet love also keeps me going. They made me tired before the cancer too! My body, my brain, my emotions, nothing feels quite the same as before, but I am learning to adapt and I am willing to accept my current state. The chemo scrambled my brain and the gene therapy I take every day is strong medicine too. My cancer is currently "arrested" and I am having a fairly normal life. Had a blood clot that put me in the hospital 10 days ago but I am almost back to the new normal. I exercise, I do yoga, and I try to eat impeccably making sure most of my calories are good calories. I juice vegetables and I am beginning to meditate again. I love my life and I am grateful to be here every day. I still cry at random times, anxiety comes and goes, I know there is still anger inside of me at God and cancer and the loss of my previous sense of well-being, but I am learning to thrive in this new normal. I was able to come off of the narcotic pain meds after the bone radiation relieved that pain. That has helped with my emotional well-being a lot. The gene therapy shrunk my cancer and stopped it from replicating. It is not gone, just stopped. I still keep a hydrocodone close by just in case, but right now I am good. I am scanning at MD Anderson every 2 1/2 months right now. They originally told me I might have only 4 - 6 months, which I knew I would beat. I didn't know how, but I knew. I hope this gene therapy will keep working for a good long while, but in the meantime I am being Mr. Mom to my boys, keeping the house as best I can and volunteering with Livestrong and trying to find people who are newly diagnosed that I can help. I am not back to work yet, and I might not be able to depending on the course of my journey with cancer, but I am enjoying my time on this planet every day. I am not going to slow down until I have to. Exercise, eat right, protect your immune system and find someone you can help every day. That is my prescription. Thank goodness for this site and others like it!

  • stage5guy's Avatar

    stage5guy posted an update

    My last scans in July showed no activity on the PET Scan and a reduction in Tumor size. It is essentially arrested, but as we all know, not cured. I have so far had the best possible response from the Xalkori (Crizotinib) I will scan again in October. I wish I could stop having the feeling of looking over my shoulder.

    I have 2 kids, 7 and 9 years old.