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2.5 Years post 3XBEP

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  • 2.5 Years post 3XBEP

    Well, it's still all surreal....walking into the Oncology center yet again for another checkup. Catching a whiff of the place, particularly the infusion room, still invokes flashbacks...makes me want to puke for a second. Sitting in the waiting room after they took my blood pressure and being told that my Onco. will be in in a few minutes....heart beating like crazy, you feel like you beat it, except for that tiny corner in the back of your mind that still screams...."Hold On, what if ?". Then the doc comes in. My immediate question is: "Is everything good ?". The answer is Yes. So how are things going ? Any question/concerns. Yes doc. and I whip out my big question: What's my surveillance looking like, particularly with regards to CTs ? we look at the NCCN guidelines and discuss it and both of our opinions. We come to agreement to do a final scan in July which will be my 3 years checkup. Next thing I dive into are my tumor markers, why was my AFP trending up this past year ?. then onto the metabolics....which always have something off every time....usually my Proteins,Calcium, Globulins and some other random metric that was normal in all other tests but this one. Somehow I ask a question about a 2mm node found in my lower lung back in July on my CT. Why was it never mentioned before ? Why was it not in past radiology reports ? We look at the scan. May have been a minor infection, collapsed air sacs in the lung, etc. nothing to worry about. Wasit from the Bleo...we'll never know. If any random joe was pulled off of the street and took a CT...they'd probably find something. But for us, we always question every little finding. Next we discuss other advances in the Oncology world. I learn something new and exciting every time....like how most patients do not respond to immunotherapy in general, but those that do, do so well. But alas even with that treatment modality there is no free lunch....they worry about the immune system then attacking normal cells. We discussed my current risks for recurrence (<1%) and that the NCCN guidelines are relaxing more on sureveillance. It's really just these 1st 1-3 years post chemo that are the highest risk years. I ask if she's had any patients who have relapsed. She had one who failed 3xBEP, then failed 4xTIP and then went to MD Anderson for High Dose....he's now 5 years out and doing very well. I can't even begin to imagine that hell. Some how the conversation turns to my previous appt with Dr. Einhorn and the Platinum study that I was in. I mentioned how miserably I failed the hearing test. She knows that she tried to avoid platinum damage to my kidneys and hearing. My Kidneys are just fine....why the bad hearing loss? I had to remind her of how I was born with a hearing loss in the high frequencies...we knew BEP would make it worse. Last but not least: time for the physical. Out comes the stethoscope, breath in/out, palpates my nodes, checks for swelling in my lower legs, looks in my eyes and ears and opens my mouth with that small spot light.... and at last the order to Drop my Pants. All right, another appt in the books with her favorite kind of patient....the curable kind. Next go see scheduling and set up my final CT scan for July and my blood work and appointment.

    Half my questions today came up as a direct result of threads on this site that I have been involved in in the last week or so.

    Yep. That's the life of an TC Oncology patient.

    I am better for it !

    Plus; I get to have some really cool t-shirts about how "I kicked TC in the ball", etc.

    Sorry for the long thread....I just sat down and started typing whatever came out.

    - Matt
    March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
    March 13th: Left IO 100% Classic Seminoma
    6.3 x 5.1 x 3.8 cm, no invasion of anything
    LDH never fully normalized
    Stage: IS
    Watchful Waiting
    May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
    May 12th: started 3xBEP
    Neupogen during Cycle 2 and 3
    July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
    August 4th: Post Chemo CT/PET scan
    September 4th: Port removed
    January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !

  • #2
    I literally had that appointment earlier today, same result. Although my Onco is a little less chatty and more all business. Probably years of treating various kinds of cancer keeps him from getting too involved in his patients.

    Interesting that you took part in the Platinum study. I went there in Oct and participated. Much to my and my wife's dismay, they said my hearing was just fine. For some reason I don't hear my wife very well though!!!!! hahahahaha
    6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
    6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
    7/7/15: bHCG 56, AFP 42, LDH 322
    7/13/15 - 9/18/15: 4xEP
    10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
    10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
    4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
    4/20/16: RPLND @ IU - teratoma only!
    1/9/17 all clears up to this date!

    Comment


    • #3
      LOL !

      I don't mind my "selective" hearing either....it keeps me out of some troubles/tasks/questions.

      However my wife does wonder why she can be in another room, clear across the house, and with a very low voice just mentions: "wanna have sex"....and I'll hear that.

      Congrats on your ALL Clear too.

      - Matt

      March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
      March 13th: Left IO 100% Classic Seminoma
      6.3 x 5.1 x 3.8 cm, no invasion of anything
      LDH never fully normalized
      Stage: IS
      Watchful Waiting
      May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
      May 12th: started 3xBEP
      Neupogen during Cycle 2 and 3
      July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
      August 4th: Post Chemo CT/PET scan
      September 4th: Port removed
      January 11th 2017: 2 & 1/2 YEARS ALL CLEAR !

      Comment


      • #4
        Congratulations to you both on the all clear. Im jusr starting my journey and hopefully will be sitting in the oncologist in a couple years getting the same news, fingers are crossed!

        Comment


        • #5
          Congratulations guys and well done! we are hoping to be in the same situation too....

          Comment


          • #6
            Congratulations, Matt! I completely know that conversation and the ritualistic digging into test results, etc. I have asked very similar questions. Ultimately, so, so, so happy that you are 2.5 years cancer free!

            Celebrate!
            9/27/2011 - Mass detected
            10/4/2011 - Left I/O; Seminoma; Stage I
            11-12/8/2011 - Radiation therapy
            2012 - 2013 - Surveillance
            2/6/2014 - bHCG 7.3, then 9.2
            2/10/2014 - Recurrence confirmed, CT scan detected a chest tumor: 7.1 x 5.6 x 8.7 cm in diameter. Also a lymph node 1.4 x 1.0.
            2/17/2014 - 3xBEP
            5/12/2014 - Tumor completely resolved
            9/12/2014 - New nodule on CT scan
            11/11/2014 - Nodule increased from 1.2 x 0.7 cm to 2.9 x 0.9 cm.
            12/8/2014 - HDC Autologous Stem Cell Transpant in Indianapolis
            1/16/2015 - Tumor completely resolve!
            3-6/2016 - started having severe and worsening headaches
            6/28/2016 - 9.8cm brain tumor detected; emergency brain surgery
            8/10/2016 - Radiation (6 weeks) to entire brain and spine to treat brain tumor (suspected leptomeningeal disease)

            Comment

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