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marven

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    marven reacted to rayj3497 in i am alive   
    hello again. its been awile.so a little recap. my name is raymond johnson and i had my first biopsy on 1 april 2017 and diagnosis with non small cell squamous lung cancer.
     due to local medical delays, i finally went to memorial sloan kettering for treatment. i was given tencentriq for pre surgery treatment. then surgery was delayed twice due to electrolytes unbalance. on 1 aug 2017 i had my surgery. my right lung was removed with clean margins. no cancer cells left behind. but. my surgeon said i had a very massive muscular vascular chest wall, which made it hard to close. so, after 5 chest surgeries to fix the many air and blood leaks, 2 cardiac arrests, 2 strokes/tia, pneumothorax, compartment syndrome , massive electrolyte imbalance, i survived. i am alive. i have pain from the surgeries, going to rehab 3 times a week  and my local doc is taking over in managing my synthroid meds. but i am alive... to be continued...... peace and love to all
  2. Like
    marven reacted to Tom Galli in Husband with NSCLC...severe pain on right side   
    JustMe,
    My PhD in Lung Cancer Surviving (engineer's attempt at light humor) would prescribe patience.  Having said that, I was the most impatient lung cancer patient on record. My long suffering wife not only had to care for me but put up with my angst.  Martha says angst is a synonym for my name!
    I know about your depression and breaking heart and as I say often, I wish my magic wand could wave all this away.  I got to the point where my oncologist was attempting to treat my Squamous cell NSCLC as a chronic illness.  He kept feeding me taxol and carboplatin along with the then newly introduced Tarceva and the drugs, save the Tarceva, would knock back the tumors.  But about 6 months after a NED (no evidence of disease scan), the beast would return.  So I'd spend 18 weeks in chemo misery and 24 weeks living.  But that angst thing kept me fretting so much that I forgot the key reason for going through the treatment madness -- extended life.  I was fretting rather than living.
    The moment he feels better, even if it is a two or three day window, go take a drive to Mount Washington.  The view from the summit is just the tonic you need -- suspenders for your positive pants.
    Stay the course.
    Tom
  3. Like
    marven reacted to Tom Galli in Husband with NSCLC...severe pain on right side   
    Just Me,
    What Susan said....
    Pain is an indication that something is wrong and it is my experience that tumors in the lung and other organs are not painful unless or until lung cancer invades the bones.  So a scan to check for that condition appears to be the best solution.
    Stay the course.
    Tom
  4. Like
    marven reacted to Susan Cornett in Husband with NSCLC...severe pain on right side   
    Has he had a CT or a pet scan?  Those tests are generally more accurate than xrays for detection of cancer cells.  Are you dealing with his oncologist, PCP, or other doc on the side pain?  Surely one of them can address this with you.  Just keep asking until you get answers.  We have to be our own biggest advocates and sometimes that means asking the same question again and again.  
     
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