Announcement

Announcement Module
Collapse
No announcement yet.

My story so far, and a question?

Page Title Module
Move Remove Collapse
X
Conversation Detail Module
Collapse
  • Filter
  • Time
  • Show
Clear All
new posts

  • Originally posted by MarkOne View Post
    Almost at 3 years out now and my biggest worry is remembering to make the appointments.
    I always make my next appointment before leaving the office, otherwise I would procrastinate & never call. I've had to cancel & reschedule a few times, but I get in when I need to this way.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • First 2 month checkup was all clear today !
      24 year old diagnosed 6/11/16
      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
      Pre/o CT Clear
      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
      Post-op CT with one enlarged lymph node - 1.5x1cm
      Borderline stage 2B/3B
      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
      CT and markers clear - in remission - 28/2/16

      Comment


      • NISH~ Congratulations!!! Awesome news!!
        17 year old son Grant dx 12/21/16
        pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
        pre/o CT Scan 12/22/16 normal
        r/o 12/22/16
        Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
        PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

        -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
        2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
        BEP x 3 1/27/17
        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

        Comment


        • Thank you !
          24 year old diagnosed 6/11/16
          Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
          Pre/o CT Clear
          Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
          Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
          Post-op CT with one enlarged lymph node - 1.5x1cm
          Borderline stage 2B/3B
          BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
          CT and markers clear - in remission - 28/2/16

          Comment


          • Nish

            Brilliant news! Long may it stay that way.

            Originally posted by Davepet View Post
            I always make my next appointment before leaving the office, otherwise I would procrastinate & never call. I've had to cancel & reschedule a few times, but I get in when I need to this way.

            Dave

            But then what would I have to worry about?

            I look at it that if all I have to worry about is to remember to make appointments on time then I can't be doing too bad. The date gets put on enough calendars, paper and electronic by me, the wife and half the family that I will never forget it in reality.

            Comment


            • Congrats, Nish, great news!!

              Comment


              • Just an update, my 2nd checkup came back clear the other day!

                Still got tinnitus and my hair isn't really growing back sadly, but oh well.

                Did a football charity event today for Macmillan, a (I think only UK) based cancer charity, and raised over 1000!
                24 year old diagnosed 6/11/16
                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                Pre/o CT Clear
                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                Post-op CT with one enlarged lymph node - 1.5x1cm
                Borderline stage 2B/3B
                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                CT and markers clear - in remission - 28/2/16

                Comment


                • NISH~ Great news!!! It is one of those things with lingering tx side effects, hopefully the ringing will go away, and your hair will grow. That is awesome that you did a football cancer charity event.
                  17 year old son Grant dx 12/21/16
                  pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                  pre/o CT Scan 12/22/16 normal
                  r/o 12/22/16
                  Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                  PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                  -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                  2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                  BEP x 3 1/27/17
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                  Comment


                  • Great news! I hear your local club are short of players following their recent takeover. You may get a call up from the Os. ;-)

                    Comment


                    • Thanks guys!

                      Ha Mark, i'm back playing 2-3 times a week but the fitness is nowhere near what it was (to be expected).

                      It's a bit frustrating but it'll get there! The tournament was a very high standard, some semi-pros there so I was quite out of my depth ha but all for a good cause!

                      How are you?

                      How is Grant Trekga?
                      24 year old diagnosed 6/11/16
                      Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                      Pre/o CT Clear
                      Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                      Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                      Post-op CT with one enlarged lymph node - 1.5x1cm
                      Borderline stage 2B/3B
                      BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                      CT and markers clear - in remission - 28/2/16

                      Comment


                      • Hi Nish, you will get there with fitness. That tournament sounds like it was a blast!
                        Thanks for asking about Grant- he had his off therapy party last Thursday. Need to call tomorrow about his HCG, but from the patient portal it looks as though his first post treatment blood work shows nothing abnormal His hair has grown in a good bit lighter than before. I'm certain it will darken again as his facial hair is much darker
                        17 year old son Grant dx 12/21/16
                        pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                        pre/o CT Scan 12/22/16 normal
                        r/o 12/22/16
                        Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                        PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                        -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                        2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                        BEP x 3 1/27/17
                        Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                        2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                        Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                        Comment


                        • NISH, glad to hear the checkup came back clear. Can I ask you what is your checkup protocol? How many scans, bloodworks etc. will you have?

                          Comment


                          • Originally posted by Nish115 View Post
                            Thanks guys!

                            Ha Mark, i'm back playing 2-3 times a week but the fitness is nowhere near what it was ...

                            How are you?

                            No surprise that the fitness is a bit down after what you have been through. Even my "chemo-lite" Carboplatin took me about 6 months to get fully over and two cycles of that doesn't hold a candle to 3 BEP in terms of what it puts your body through. Give it time, you will recover the fitness, just don't over do it.

                            I am great thanks. Three year check done two months ago. All good. Consultant even mentioned for the first time that at five years we have to decide how long to carry on the checks for. Personally, I am happy to carry on for a few more years, if he is. I treat it as like an MOT test now. The fear of relapse that used to grip me when my initial follow ups approached has now totally gone, thank goodness. I will raise a glass to all our continued good health, long may it stay that way.

                            Comment


                            • Good to hear about Grant and you Mark!

                              Singa, thanks! I am on 2 monthly bloodworks and yearly scans for now. I was concerned about the scans being too little, but i've done some research and it should be fine. Does that help?
                              24 year old diagnosed 6/11/16
                              Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                              Pre/o CT Clear
                              Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                              Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                              Post-op CT with one enlarged lymph node - 1.5x1cm
                              Borderline stage 2B/3B
                              BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                              CT and markers clear - in remission - 28/2/16

                              Comment

                              Working...
                              X