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22 year old, NSGCT lung mets , trying to find any hope.

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  • 22 year old, NSGCT lung mets , trying to find any hope.

    hello guys,

    I have reading all the topics here, so great to see that many of you are up and healthy. Wish you great health. Thanks for supporting all the guys here.

    Im a 22 year old boy , felt a lump in my right side which i ignored for 4+ months. USG revealed tumor with tiny calcification in right testicle. Doc advised me to go for CT before surgery. No lymph nodes detected. But unfortunately some some nodes in left lungs.(recommended PET after surgery)


    markers pre-op 21/06/2018
    afp 14.9
    bhcg- 737
    ldh- 376



    Had right I/O on 19/06/2018

    pathology came in


    mature teratoma with yolk sac but doc wanted reassure it once again , an unexpected bad news chrio component was found , IHC confirmed.
    reports said the tumor was necrotic with focus of choriocarcinoma but no percentage composition.(good news nsgct are responsive to chemo even with chorio component)

    01/07/2018 happy birthday. other family people are told its a hernia operation . birthday celebrated while recovering (22 years completed)

    11/07/2018-pet ct confirmed 3 mets left lungs. largest being 2cm. fortunately no other mets anywhere(thinking optimistically) stage 3a confirmed. -good prognosis.

    a family oncologist told me to get bhcg as half life will be normalised
    unofficial bhcg (12/07/2018) - 1819 (rised )

    markers post-op
    afp - 2.16
    bhcg -3301
    ldh- 351

    i mailed Dr. Einhorn with all the reports, he recommended 3x BEP with hcg level still lower than 5000.Also quoting 90% cure rate even with chorio component.

    Now my oncologist recommend 4x BEP as we cannot take any chances.

    started my 1st cycle on 19/07/2018
    5days went well. thank god .
    6th day, constipated, nausea, giddiness after vomitting.
    7day i feel fatigued even to sit. All i can do is lay down. Booster shot, severe acidity at night.
    8th day bleo shot.
    regained much energy since yesterday. i feel lot better.lost taste, any food is just grass .
    lemon helps with almost anything. the ears rings sometimes for 5 seconds.

    hoping other 3 cycle go better than this.

    1)I see many survivors and it feels great. But i see many stage 1 and 2 the most and only they got away with chemo ,others had to go through 2nd in line VIP OR TIP i feel scared of the relapse. Are there non seminona people here who got away with just BEP or do i to accept the fact this is the complete package with potential RPLND, retrograde ejaculation , lung metesectomy , VIP or TIP.

    2) did only chorio part mets to lungs? which is rising the bhcg. I'm worried about pure chorio of lungs. Should I wait till im done with one cycle to check? i have seen BEP chemo failing in some people with lung mets(CHORIO ).

    3)will i survive? and the how is the quality of life for you people after in remission? will we ever peace of mind as we did before?

    4) on coming side effects? hair loss and just about anything else?

    as im dealing with with this nonsense other side of life was a such progressive time and to go through this was devastating. I just completed my engineering degree 5/2018 been hired in XYZ. come to work on 09/08/2018 I was all ready to set my life up. The news just utterly shattered all of my hopes to bits. Being hired to getting a death sentence in just weeks.


    ___________________
    thanks to guys like mike, davepet , melanie and others who have been here long. Appreciate your support.
    painless lump rightside over 5 month
    tumor markers- afp-14.9 hcg-773
    06/2018- right i/o

    path- teratoma/yolk sac/chorio

    afp down at 2.3 hcg-3303

    ct- no lymph involvement, lung mets (stage IIIA)

    07/2018- start of 3xBEP +1EP

  • #2
    so sorry! I would highly follow Dr. Einhorn's advise- he is a true TC expert. Try and take each cycle as it happens, everyone is different. My son was 17 when dx, and graduated high school this past May. He is a 14 months post treatment-chemo & post chemo RPNLD.
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    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


    • #3
      Do not look at it as a death sentence because it is not. It is a very trying time in your life. Attitude is everything in cancer fight. Luckily it is tc which is not tslked about in terms of other types of cancer. TC is talked about in cure rates. In the upper 80 to high 90 %.
      Congrats on the E degree. It means you are a very smart young man that has a heck of a future ahead of you. But get your tc taken care of because you will have alot of job offers ahead of you. You will be able to use this as a very good interview response question. Whst was the hardest thing you have dealt with in your life and how did you handle it. See where i am going with this. I will not say you are gonns be cured or your not gonna be cured, but the fact is overwhelming more of us survive TC than do not and you are not on the down side. So stay positive and do what needs to be done to rid yourself of TC
      Jan 2012- U/S mass in Left testicle
      Feb 2012- I/O performed to remove cancer
      Mar 1,2012- pathology pure seminoma
      Mar 7, 2012 PET SCAN stage IIa
      April 2012 Mayo clinic carbolite.
      May 2012 carbolite failed, started BEP x3
      August 7th 2012- BEP complete
      April 2013 CT/PET show relapse
      May 2013 RPLND
      Aug 2013 Relapse again Started VIeP x2
      Oct 2013 HDC AUTOLOGOUS
      Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
      Feb 2014 confirmed false positive all clear FINALLY !
      Jan 2015 1 year cancer free Pet/CT scan
      Jan 2016 2 years cancer free "Pet/CT scan
      Jan 2017 3 years cancer free "Pet/CT scan
      Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

      Comment


      • #4
        thanks for your quick response . i feel better now.
        trekga, hope your son is doing well. its a good thing he is in the clear. His age makes me feel sad and both angry, at that age what he must have felt , it must have been difficult. im sorry.. wishing him al the luck.
        Edotech good see those all clears..
        im going in for 2nd cycle, will it be better or worse than before? 1st wasn't that bad except fatigue for next two days. so any advice for on coming ?
        I Just started to lose my hair it's all over pillow this morning.
        painless lump rightside over 5 month
        tumor markers- afp-14.9 hcg-773
        06/2018- right i/o

        path- teratoma/yolk sac/chorio

        afp down at 2.3 hcg-3303

        ct- no lymph involvement, lung mets (stage IIIA)

        07/2018- start of 3xBEP +1EP

        Comment


        • #5
          Originally posted by metroman View Post
          im going in for 2nd cycle, will it be better or worse than before?
          Yes.


          There is no way to tell, actually. Each cycle was a little worse for me. Others report the first was the worst for them. Only advise is to just keep doing what you did to get through the first cycle & hope for the best.

          Dave

          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment


          • #6
            I was 22 when I was originally dx non seminoma. I was scheduled for 4xbep but ended up doing 3xbep and 1xep. Bleo was damaging my lungs too much.

            I did have to have RPLND, IMHO it’s not as scary as it seems. Chemo was worse, imho.

            But I was cancer free after that.

            It’s not a death sentence.

            Comment


            • #7
              thanks guys, for quick and positive replies. I want to post updates.For me, i would see an ALL CLEAR and be happy this cancer is beatable. So posting post my updates.

              After orchiectomy,
              afp fell but bhcg kept on increasing.
              afp-2.3
              bhcg-3303
              lhd-351

              17/09/2018- started 3XBEP +1EP( still deciding whether to lose the last cycle im -stage 3a - good risk)
              markers after completing first cycle/before 2nd cycle-
              afp-1.4
              bhcg-49
              ldh-349


              looks like my treatment is going well.

              I completed 2nd cycle and with normal side effects. Looks like side effects add over the cycles. Anyway im doing well.

              next markers on 30/08/2018- 3rd cycle starts.
              Last edited by metroman; 08-25-18, 07:14 AM.
              painless lump rightside over 5 month
              tumor markers- afp-14.9 hcg-773
              06/2018- right i/o

              path- teratoma/yolk sac/chorio

              afp down at 2.3 hcg-3303

              ct- no lymph involvement, lung mets (stage IIIA)

              07/2018- start of 3xBEP +1EP

              Comment


              • #8
                That huge drop in hcg is very encouraging! Did they do another marker test after round 2 was done?
                Jan, 1975: Right I/O, followed by RPLND
                Dec, 2009: Left I/O, followed by 3xBEP

                Comment


                • #9
                  waiting for markers results to come in today..
                  painless lump rightside over 5 month
                  tumor markers- afp-14.9 hcg-773
                  06/2018- right i/o

                  path- teratoma/yolk sac/chorio

                  afp down at 2.3 hcg-3303

                  ct- no lymph involvement, lung mets (stage IIIA)

                  07/2018- start of 3xBEP +1EP

                  Comment


                  • #10
                    afp-1.3
                    bHCG - 3.0
                    ldh - 480

                    hcg went down, looks good but any idea why ldh has increased!?
                    it was 349 previously.
                    painless lump rightside over 5 month
                    tumor markers- afp-14.9 hcg-773
                    06/2018- right i/o

                    path- teratoma/yolk sac/chorio

                    afp down at 2.3 hcg-3303

                    ct- no lymph involvement, lung mets (stage IIIA)

                    07/2018- start of 3xBEP +1EP

                    Comment


                    • #11
                      Your LDH is probably elevated because the chemo is kicking the hell out of good and bad cells. Ldh isnt a tumor marker but is used as a tool by doctors to determine cell destruction. I would not be to concerned given your probably still doing chemo and your tumor markers are going down.
                      Jan 2012- U/S mass in Left testicle
                      Feb 2012- I/O performed to remove cancer
                      Mar 1,2012- pathology pure seminoma
                      Mar 7, 2012 PET SCAN stage IIa
                      April 2012 Mayo clinic carbolite.
                      May 2012 carbolite failed, started BEP x3
                      August 7th 2012- BEP complete
                      April 2013 CT/PET show relapse
                      May 2013 RPLND
                      Aug 2013 Relapse again Started VIeP x2
                      Oct 2013 HDC AUTOLOGOUS
                      Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                      Feb 2014 confirmed false positive all clear FINALLY !
                      Jan 2015 1 year cancer free Pet/CT scan
                      Jan 2016 2 years cancer free "Pet/CT scan
                      Jan 2017 3 years cancer free "Pet/CT scan
                      Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                      Comment


                      • #12
                        Agreed. LDH is a measure of cellular turnover. Both the destruction and creation of cells.

                        For example: My LDH went up over 2,300 right after I did a round of Neupogen shots. So in that case it was measuring a very rapid creation of new cells coming out of my bone marrow (White bloods cells and Neutrophils).

                        I would not read too much into LDH while doing chemo because it's likely to be elevated given all the stuff going on in your body at any one moment in time.

                        - 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
                        Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                        Comment


                        • #13
                          doc said the lhd doesn't account for anything, as i had neupogen shot. He still wants to proceed with 3xbep +1ep, I have also mailed the same to Dr E, he said "3xBEP should be sufficient as my hcg was less than 5000, cure rate is easily 90%"

                          Is 90% survival is real? because I see people with no sigpics.

                          Sorry for freaking out guys, im on Xanax for that matter.
                          painless lump rightside over 5 month
                          tumor markers- afp-14.9 hcg-773
                          06/2018- right i/o

                          path- teratoma/yolk sac/chorio

                          afp down at 2.3 hcg-3303

                          ct- no lymph involvement, lung mets (stage IIIA)

                          07/2018- start of 3xBEP +1EP

                          Comment


                          • #14
                            LDH alone is not meaningful for your prognosis.

                            Dr. Einhorn is the pre-eminent TC doc in the world. Not only that but, due to this, he sees the most patients with advanced disease. Therefore I'd believe 90% (on average) survival is real.
                            Age 31 - Portland, OR
                            01NOV16- Pain in right testicle, palpable mass
                            13NOV16- R I/O. Markers normal
                            27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                            06DEC16 - CT scan clear
                            09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                            03JAN17- Ended 1xBEP; start surveillance
                            18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                            Comment


                            • #15
                              Yes 90% is a very real % for beating TC cancer. Evem with poor prognosis the number is still better than 75-80 %. If you look back at my 1st post to your tread that is why i said its not a death sentence at the point you were at. There have been guys on here in alot worse shape and alot worse progression that still came out of chemo and are cancer free to this day. Me being 1 of them granted i went thru alot more than you have so far. I really dont see that happening to you. Not many of us on here have had to go all the way through every trestment they have. Look at Dave he beat TC twice way before dr E came along with current treatment. So yes 90% is a very real number.
                              Jan 2012- U/S mass in Left testicle
                              Feb 2012- I/O performed to remove cancer
                              Mar 1,2012- pathology pure seminoma
                              Mar 7, 2012 PET SCAN stage IIa
                              April 2012 Mayo clinic carbolite.
                              May 2012 carbolite failed, started BEP x3
                              August 7th 2012- BEP complete
                              April 2013 CT/PET show relapse
                              May 2013 RPLND
                              Aug 2013 Relapse again Started VIeP x2
                              Oct 2013 HDC AUTOLOGOUS
                              Dec 2013 HDC completed CT/PETSCAN 1.1 cm x .8 cm right lower lung lobe
                              Feb 2014 confirmed false positive all clear FINALLY !
                              Jan 2015 1 year cancer free Pet/CT scan
                              Jan 2016 2 years cancer free "Pet/CT scan
                              Jan 2017 3 years cancer free "Pet/CT scan
                              Jab 2018 4 years cancer free "Pet/CT scan, labs, xrays

                              Comment

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