Announcement

Collapse
No announcement yet.

My friend's name is Danny

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • My friend's name is Danny

    He's at Sloan in New York right now. I met him when I was there for my RPLND in November. He's 20 years old, from Phoenix, and he and his family have moved from Phoenix to NYC to get his treatments. Here's what I know of his story:

    He was diagnosed in July (misdiagnosed many times before that). Mixed germ cell cancer that has metzed to lungs and brain. Been through radiation and 4x BEP before being diagnosed resistent.

    He has Not had the I/O, nor the RPLND.

    His hCG was 4000 and they need it below 2 before they can do either surgery.

    Getting ready to start round 4 of TIP....Here's the weird stuff:

    2 weeks ago, between 3rd and 4th round of TIP, hCG went from 20 to 40 to 80 to 85. Drs. sat with him and family and said that he must be resistent to this too, and that rising counts during chemo are a brutal sign. Told him to get affairs in order, that he was terminal.

    He went in last Thursday and they drew his hCG. It had dropped to 13! The best docs in the world agree that there is no medical explanaion for this. As of yesterday his hCG is at 8! Is this a miracle?

    Now he's sheduled to go in Monday for Round 4 of TIP.

    All this boy wants in the world is to have the RPLND and I/O. He's fought harder and longer than anyone should have to. The chemo has wrecked him physically and emotionally, but he keeps finding a way to get up and do it again.

    Danny is a huge Lance Armstrong fan and I have tried every avenue I can think of to try and get him 5 minutes on the phone with Lance. Went to the Mgmt company, and actually met the LAF dietician at a party and asked for her help as well. Nothing yet, but if any of you know of anything else I can try, please tell me.

    This boy is 3000 miles from home. His family has stopped everything in their lives to fight with him and every time there has been progress it has been immediately followed by a setback. This new hCG count could be a real light at the end of the tunnel for him.

    Please share your thoughts or ideas on this one. My wife posts here often (Margaret) - Hi Honey...she knows more detail about Danny than I can post here.

    Please pray for him. Please share your experience if it has been similar. Please help this boy Fight. Danny..if you find this post...Don't Quit!
    Last edited by Scott; 06-17-07, 05:52 PM.
    Stage III Non-Seminoma- 7/11/06
    Right I/O 7/12/06
    Completed 4x BEP 11/06
    Bi-Lateral RPLND (Dr. Shenifeld)- 11/27/06
    Surveillance since then

    When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
    Lance Armstrong.

  • #2
    Scott, who posts here often and who is such a supportive person, sent me a letter to send to Danny along with an awesome picture of him and Lance Armstrong.

    Scott, I did send it to Danny and I know it made his day. Boyce and I feel very helpless when it comes to this kid and we just don't know how to help him and his family...so we just pray a lot for him.

    Thanks again Scott!!!

    Margaret
    Co-survivor with husband Boyce, Diagnosed 7-11-06, orchiectomy right testicle on 7-12-06- Stage 3A: Mixed germ cell tumor with inguinal seminomatous and kartotypic carcinoma. One tumor over 10 cm, second tumor 4 cm, Chemo 4xBEP: Bi-lateral RPLND Dec 2006, nerve sparing but left sterile.
    Current DVT
    Current testosterone replacement therapy, Testim.

    "You must abandon the life you planned, to live the life that was meant for you" ~wisdom I have learned from my family on this forum

    Comment


    • #3
      Originally posted by boyce View Post
      He's at Sloan in New York right now. I met him when I was there for my RPLND in November. He's 20 years old, from Phoenix, and he and his family have moved from Phoenix to NYC to get his treatments. Here's what I know of his story:

      He was diagnosed in July (misdiagnosed many times before that). Mixed germ cell cancer that has metzed to lungs and brain. Been through radiation and 4x BEP before being diagnosed resistent.

      He has Not had the I/O, nor the RPLND.

      His hCG was 4000 and they need it below 2 before they can do either surgery.

      Getting ready to start round 4 of TIP....Here's the weird stuff:

      2 weeks ago, between 3rd and 4th round of TIP, hCG went from 20 to 40 to 80 to 85. Drs. sat with him and family and said that he must be resistent to this too, and that rising counts during chemo are a brutal sign. Told him to get affairs in order, that he was terminal.

      He went in last Thursday and they drew his hCG. It had dropped to 13! The best docs in the world agree that there is no medical explanaion for this. As of yesterday his hCG is at 8! Is this a miracle?

      Now he's sheduled to go in Monday for Round 4 of TIP.

      All this boy wants in the world is to have the RPLND and I/O. He's fought harder and longer than anyone should have to. The chemo has wrecked him physically and emotionally, but he keeps finding a way to get up and do it again.

      Danny is a huge Lance Armstrong fan and I have tried every avenue I can think of to try and get him 5 minutes on the phone with Lance. Went to the Mgmt company, and actually met the LAF dietician at a party and asked for her help as well. Nothing yet, but if any of you know of anything else I can try, please tell me.

      This boy is 3000 miles from home. His family has stopped everything in their lives to fight with him and every time there has been progress it has been immediately followed by a setback. This new hCG count could be a real light at the end of the tunnel for him.

      Please share your thoughts or ideas on this one. My wife posts here often (Margaret) - Hi Honey...she knows more detail about Danny than I can post here.

      Please pray for him. Please share your experience if it has been similar. Please help this boy Fight. Danny..if you find this post...Don't Quit!

      Friends,
      HEre is Boyce's first post- Waht a guy.
      We are all having such a great time here, cept Boyce is still sleeping.
      Boyce, you don't get up soon I am going to crawl in bed with you for the photo op!
      Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
      Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

      Please see a physician for medical advice!

      My 2013 LiveSTRONG Site
      The 2013 Already Balders

      Comment


      • #4
        After all Boyce has been through, his first post on here was to help someone else... As you say, Joe, What a guy.

        I think you should make it your personal mission to get as many embarrassing photos of Boyce as possible, and post them here!
        Nick

        Embryonal Carcinoma; Seminoma. Marker negative.
        August 2001: Right I/O .
        August - December 2001: Surveillance .
        December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
        December 2001 - March 2002: 3xBEP .
        Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

        March 2012 - Ten years since finishing chemo.

        Survivorship Blog is here

        Comment


        • #5
          I've never seen this before today. It brought me to tears. Danny felt a special bond towards both you and Margaret....We still do, and can't wait to give you lots of hugs in Philadelphia!!!

          LOVESTRONG,

          Nancy
          DannysMom&Dad

          Danny & Team LOVEstrong
          in the 2009 LIVESTRONG Challenge.

          Comment


          • #6
            Ira:
            Its great to see you post again. Yes, it was M&B who introduced all of us to Danny. It's an introduction that will stay with me for all time.
            Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

            Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

            Comment

            Working...
            X