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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.

  • Ryan Bi
    replied
    Hi metroman,

    This is wonderful news!

    Amy, Ran’s momm

    Leave a comment:


  • biwi
    replied
    great to hear!

    Leave a comment:


  • metroman
    replied
    9 months all clear guys, lung nodiles have shrunk away... and hair is back with weird facial hair.. ill take it..

    Leave a comment:


  • metroman
    replied
    my onc agreed on 3xbep. Im having last bleomycin next week.
    When will be the CT be scheduled, doc says a month after treatment should be fine.
    But im curious if the treatment has worked and lung nodules are worriesome.(even though hcg is 3 after 2nd cycle)

    Leave a comment:


  • Trekga
    replied
    TC is one of the most curable cancers. Good luck with beginning treatment.

    Leave a comment:


  • Davepet
    replied
    Small correction: I beat TC the first time years before Doc E came out with BEP, the second time, I beat it because of BEP.

    Dave

    Leave a comment:


  • eodtech2001
    replied
    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.

    Leave a comment:


  • mcintoda
    replied
    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.

    Leave a comment:


  • metroman
    replied
    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.

    Leave a comment:


  • JeskiM69
    replied
    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

    Leave a comment:


  • eodtech2001
    replied
    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.

    Leave a comment:


  • metroman
    replied
    afp-1.3
    bHCG - 3.0
    ldh - 480

    hcg went down, looks good but any idea why ldh has increased!?
    it was 349 previously.

    Leave a comment:


  • metroman
    replied
    waiting for markers results to come in today..

    Leave a comment:


  • Davepet
    replied
    That huge drop in hcg is very encouraging! Did they do another marker test after round 2 was done?

    Leave a comment:

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