jdub54's Journey:

Patient: Head & Neck/Throat Cancer > Nasal Cavity and Paranasal Sinuses Cancer > Malignant Melanoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 8 years ago, Male, Age: 63, Stage IV

  1. 1
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    Diagnosed

    Oh No

    Jan., 2009 Who knew that nosebleeds could mean that the most virulent version of melanoma had camped out in my nose?!

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  2. 2
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    Feb. 2009 Intra-nasal minimally invasive surgery (instead of the "normal" facial degloving Learning Channel experience); large clean margins. Permanently messed up sinuses from surgery and radiation, but coping with Claritin, Sudafed, salt water rinses (netti pot to keep things moving) and such; but still, better than the results most experience. Permanently 80% blocked in one side of nose, salt rinses and OTC meds to stay clear, occasional sinus infections.......compared to the probable outcome that isn't (still), it is nothing to XXX about!

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    External radiation

    Radiation

    March-May, 2009 First 3 weeks were nominal, but the last 4 plus lingering aftereffects helped me drop 40 lbs. I needed to lose anyway. Midway thru, eating was becoming excruciating, any contact with my palette was uncomfortable, even drinking liquids. To this day, nose is crooked from tissue shrinkage, sinuses permanently impacted, can't grow a mustache anymore! Again, though, there are far worse outcomes than this.....

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    March 2010 14 months post-diagnosis, minimally invasive thoracic surgery to excise the only (so far) met; 30 months later that (after no other therapies), still NED. Semi-permanent adhesions in chest wall hurt when I sneeze...again, way better than alternate outcome should have been per the stats.........

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  5. 5
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    no such thing as remission here, but 3.5 years in, 2.5 years N E D, and disease free....for now

    Celebration

    Present, Oct. 2012, 45 months since diagnosis It's 50/50 or worse that I should already be just a memory, yet I somehow, by shear fluke of luck or a genetic + in my genome/genetic weakness in my melanoma strain, i am well and 30 months NED. No one will put any number to it, as mucosal melanomas are, per NIH, invariably fatal. Oncologists say that every ONCE in a while, someone skates away for a full life. Will the Lucky Dog be me? Time (or a shortening thereof) will tell...........

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  6. 6
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    Relationship

    Loss

    Summer 2011 My one penpal (in Great Britain) with the same condition lost his battle in less than two years from diagnosis. Of all the melanomas, mucosal ones are the most virulent (usually), the least understood genetically, the least understood for causality, and the least treatable via chemotherapy. Prophylactic therapies? ZILCH He fought hard, but a slower diagnosis and distant mets at diagnosis probably took him down. We never met in reality, but losing Laszlo really hurt; but not as much to me as, obviously, his wife Claudia. I wish her health and happiness.

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  7. 7
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    might have to skip a scan or pay out of pocket....

    Decision Point

    Insurance company is bucking this 1/4s PETscan-I alternate every 3 months, CTs in Sept, PET in Dec, alternating every quarter. Now they say only one or two scans per year, since I have no clinical indications. Here's why they suck: I HAVE STAGE IV MELANOMA that started as a first tumor INTERNALLY; therefore, there is no sign or symptom until it shows up, per their rule, in semi-annual scans. NOT ACCEPTABLE! I advised them that this ain't the normal skin cancer, but the uber-virulent mucosal melanoma; The head of the nurse/counselor corps is taking it on.....scan is in 4 days, may have to cross fingers and hope for post-services authorization. NOT a way to reduce stress in the patient. NED for over 30 months, but weary of the insurance battles.

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  8. 8
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    What to do with my life now

    Decision Point

    With no clue if it will get me next month, next year, next decade, or never, it has us "frozen" in decision making about retirement and ,moving forward. So, for now, life goes on: after forced early retirement due to age on a safety-related job (always knew it would arrive but never could get fully ready), I found a new job at 1/2 pay, living with 30% reduced total earnings, doing every day things like working, paying bills, paying taxes, picking up dog poop so I can mow my yard, fixing things at the houseq, and never enough time to do it all. Yup, life just goes on as before. Retirement? We want it badly but have no clue how we will ever do it, don't want to move South and then strand the wife far from her (current) job and friends if/when my dark passenger returns (Thanks for that perfect phrase, Dexter!).

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  9. 9
    • jdub54
    • Experience with Malignant Melanoma, Nas...
    over 4 years ago
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    Insurance vs. doctor's desires, again....

    Decision Point

    After several fruitless calls and a complete change from PETs to CTs accomplished, and some frank words w/head of Nurse Counseling at the Insurance Co., they magically approved the PETs. Imaging center worked out a swap back to PETs on the new day, and all is well. I warned them not to kill me, that since this is my Fed retiree med plan I might call Senators and Representatives, that they should refer to the prior Nurse/Counselor's homework to justufy tighter than standard monitoring.......not sure what actually turned the tide. Blood, scans, ultrasounds all good, Docs all say I am well......inexplicably, and thankfully. I live to fight another insurance battle another day. EVERYONE needs to be an aggressive self-advocate........

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