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  • #1

    Jon's Survelliance Thread

    Hi, quick update on my husband.

    We are 4 months out of HDC, 3 1/2 months out from chest and neck surgery and 10 weeks out from the RPLND...and he is doing great! Getting stronger every day.

    Last blood test was Jan 12 and AFP was 3.6 and HCG <4 (our hospital doesn't give the exact # unless it is over 4). HCG has been normal since the first round of HDC and the AFP since the neck/chest surgery - yeah!

    We now have bi-monthly blood tests and CT Scans every 4 months (our first is March).

    Sometimes I'm scared to share the good news, I don't want to jinx the good luck. But I'm thrilled and so proud of him. I also want others who might have to go through HDC to know that good things wait on the other end of the treatment.

    Thanks for listening (and reading)

    Lori
    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
    Tags: None
  • #2
    Congratulations!

    May you have many more happy milestones!

    djm
    Detected mass 10-6-06, Radical left I/O 10-10-06, Stage I seminoma, 1.5 cm primary, No LV invasion, No Rete Testis Invasion... Currently on Surveillance.

    Comment

    • #3
      Congrats Lori. I am SO glad to hear that the news continues to be good.

      Emily
      sigpic Husband diagnosed 10/19/2006. EGCT, with mets to lung, brain, lymph nodes and liver, 4XBEP finished 12/25/2006. Began HDC 2/12/2007 at IU. HDC failure 5/07. Husband passed away 7/14/2007.

      Comment

      • #4
        Wonderful news, Lori.
        Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
        Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

        Comment

        • #5
          That's wonderful news, Lori! Thanks for sharing it!
          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

          Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

          Comment

          • #6
            Awesome news, Lori! Here's to continuous good tidings,
            "Life moves pretty fast; if you don't stop and look around once in a while, you could miss it." -Ferris Bueller
            11.22.06 -Dx the day before Thanksgiving
            12.09.06 -Rt I/O; 100% seminoma, multifocal; Stage I-A; Surveillance; Six years out! I consider myself cured.

            Comment

            • #7
              This is terrific news Lori, it makes me feel more secure that my brother is going to be fine too....
              Thankyou and may great times be ahead for you both now
              Jenny

              Comment

              • #8
                Well we had our 6 month post HDC blood test follow up and all markers still normal. Yeah!! What a stressful day though. Next test will be CT Scans in March. We haven't had those since the RPLND so I'm sure we'll be nervous again. But, I doubt that nervousness ever goes away.
                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

                • #9
                  That's great news congratulations. Are your post RPLND scans being done at the same facility that did the RPLND? The only reason I ask is to warn you that even if nothing is wrong it possible that a reader will note abnormalities because of you husbands new interior design. It will have nothing to do with seeing tumors. It didn't happen to us but Sloan gave us that warning.
                  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

                  • #10
                    Yeah I agree. It just happened to us last week. My husband had his first CT scan post RPLND at a different facility than he had the RPLND done. They noticied a 1.2 x 18 cm elarged lymph node that they said looked to be metastasis. We contatced Dr. Einhorn/Dr. Foster and they said it was just the bodies way of responding to the surgery, and as long as the tumor markers were still normal (which they were) not to worry about the lymph node. I just say this becasue we freaked out about the lymph node as did the doctor where my husband is getting his surveillance done and we had no idea it was nothing to worry about. It was a few stressful days.

                    Hope this helps someone else in this position.
                    Erin (caregiver)
                    Hubby Stage IIIC Diagnosed 10/27/05,
                    HCG 512,000 AFP 636 LDH 1012, I&O 10/28/05
                    1 x EP, 2 x VIP, then 2 x BEP (10/31/05-1/06)
                    Sterotactic Radiation to two brain tumors 12/05
                    Sterotactic Radiation to new brain tumor 4/4/06
                    Whole brain radiation 4/15 -5/18/06
                    Tandem High dose chemo and stem cell 6/5/06-7/31/06 - markers normalized
                    RPLND with 9cm x 24 cm abd mass removal 9/14/06 - Only teratoma and necrotic tissue removed
                    Currently on surveillance

                    Comment

                    • #11
                      Good news Lori and Jon! And you too, Erin!
                      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

                      Comment

                      • #12
                        Thanks Erin and Dadmo. We will make sure we remember your words of wisdome when we go for our CT Scan.

                        Lori
                        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

                        • #13
                          1 year mark!

                          We passed our one year mark this week with normal tumor markers! Now we start tests every 4 months instead of 2.

                          What a mentally exhausting week. I know what we've been through still hasn't completely sunk in...but we are definitely looking toward the future now. Although that isn't to say we won't be paralyzed by anxiety again in November!

                          Thanks to all of you who continue to impart words of wisdom, hope and excellent listening (reading skills).
                          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

                          • #14
                            Wonderful news about your one year mark!!
                            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

                            • #15
                              That's what we need to hear, Lori. It is truly wonderful news. Dianne
                              Spouse: I/O 8/80; embryonal, seminoma, teratoma; RPLND 9/80 - no reoccurrence - HRT 8/80; bladder cancer 11/97; reoccurrence: 4X
                              Son: I/O 11/04; embryonal, teratoma; VI; 3XBEP; relapse 5/08; RPLND 6/18/08 - path: mature teratoma

                              Comment

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