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  • Just got back from our follow up Appt.

    Mini re-cap: Boyce's TC was discovered 7-11-06...went through 4 rounds of chemo with Belo, and had his bi-lateral RPLND at SK in December. This was our first follow up since then.

    His AFP was 2.0 and HCG was >.2, we were thrilled with those numbers. On the CT scan they did say everything looked good but they also said there are 2 areas of soft tissue mass in the left posterior periaortic region about 14 mm. The DR. said he thinks that is nothing, just a sign that the left side is working harder than the right. They are going to see how it looks in a few months...but with his tumor markers being good, I am not as stressed.

    I did ask about the fluid/sperm...they told me seeing fluid is a good sign, but that it does not mean that sperm is present. But seeing any fluid 3 months post RPLND is a wonderful sign that the nerves were spared. Only time will tell about fertility but I am not going to worry about it. Only God knows for sure if we are meant to have more children.

    I was reading the earlier post about cancer going to your head and making you worry about every little thing. I did not even have cancer but just living with someone that was suffering from it made me question everything on him and me. I still feel nervous if I see a bump or lump on myself. I am always 'looking for cancer' now and I check myself and him like a hawk. It does mess with your way of thinking a lot. Makes me feel ultra insecure.

    But we had a good day and a nice Dr. visit, what more can you hope for. Danny got our care package and he called from New York to say that he was happy and feeling stronger. He starts cycle 4 of the new chemo on Thursday. We keep posting about him because in some strange way, it feels like we are helping him and this is the only thing we can do.

    God bless you all and I hope you are having a good day too.
    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

  • #2
    Margaret, glad to hear the follow up was uneventful! Please keep us posted on Danny as well.
    Lori and Jon
    Diagnosed 5/22/2006
    I/O 5/26/2006, Stage 3, Good
    Teratoma (Majority), Seminoma (10%), Yolk Sac
    3xEP then determined not working
    HDC w/stem cell transplant 8/16/06 to 9/25/06
    Chest and Neck surgery 10/9/06 - immature teratoma
    RPLND 11/16/06 - immature Teratoma
    2/29/2008 - markers continue to be normal!
    9/16/2008 - released from Dr. Einhorn's care

    Comment


    • #3
      I am scared to death about Danny. They were going to do this 4th round of new chemo but his numbers keep rising. The doctor's at SK sat him and his family down and gave them the "there is nothing we can do further speech" when his number rose to 27 (AFP) while on the new chemo...well then as luck would have it, he went into the hospital for dehydration and they checked his numbers, just for the heck of it, and for no reason they had dropped to 7. They ran the tests 3 times to make sure it was not a mistake.

      So there was hope...well now the numbers are rising again and I have no idea what is going to happen. I have called over the last 2 days and gotten voice mail everytime. Boyce (my husband who also posts here) talked to Danny early in the week before they went back to see the doctors and he said he sounded like he was keeping hope alive. I sure hope he is okay. I am sending him miracles in my prayers.

      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


      • #4
        Margaret,
        Glad to hear things are OK with Boyce...and sad about Danny. Please let him know he is in our thoughts and prayers. Is there an address at MSK we can send him a note or card? You are and your husband are good friends to him. I know it's taking a toll on emotionally you but that poor kid needs all the support in the world.
        Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

        Comment


        • #5
          Originally posted by Karen
          Margaret,
          Glad to hear things are OK with Boyce...and sad about Danny. Please let him know he is in our thoughts and prayers. Is there an address at MSK we can send him a note or card? You are and your husband are good friends to him. I know it's taking a toll on emotionally you but that poor kid needs all the support in the world.
          Thanks so much Karen. I put together a care package a few weeks ago with letters of support to Danny. I had every family member and friend I have writing letters. My 7 year old son drew so many pictures for Danny that I could not fit them all in the package . I agree he needs all the support he can get and if it seems like it will help, I can always do another package to him. I feel sad that no matter how many creative ideas I come up with, I can't him what he really needs and wants, which is of course a cure. I still get emotional when I think of this handsome, strong 18 year old boy, laying in that hospital bed with his mother holding him while she read him the Livestrong book I gave him. It makes me cry again as I am typing this,even though I was certain I had cried about it for the last time.

          But I get so sad for everyone that should be cured and can not find their miracle. How is it that my husband was given a life with me and my son and Danny can't have the same? I feel like celebrating for every ice cream cone we share, for every movie we still get to go see, and yes even for the fights over who will empty the diswasher....but guilt...that could have been robbed from someone else.

          There is a kid, living in a hotel next door to SK, in the middle of New York City, that makes a difference. He has made me see that we all make a difference in each other's lives and it would be foolish to turn our backs to anyone. I can't and I won't. I left New York after Boyce's surgery and felt like we had left someone very special behind. He needs to get home too.

          All I am left with are my hopes and prayers.

          I have a t-shirt I wear that says "Someone I love has Cancer" and my little boy said to me the other day.."But Daddy does not have cancer anymore, he is in remission"....But I told him that even if Daddy is getting better there are still so many people in my life that have cancer, and I am not going to stop loving them or forget about them because God blessed us. God blessed us because he knew we would try and bless others. I know I don't know many of you well...I have a place in heart for everyone here and I do feel love on this board and when I wear my 'someone I love has cancer' shirt I think of all the wonderful people with cancer (and caregivers) and I am sending my love and support everyday. I hope I did not get too sappy on you guys....
          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


          • #6
            Originally posted by Margaret
            I hope I did not get too sappy on you guys....
            Not too sappy for me. I'm glad there are people like you in the world, Margaret.
            Scott
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

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