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Pure Choriocarcinoma HCG after BEP x4

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  • Pure Choriocarcinoma HCG after BEP x4

    Hello All,

    I am new here but, I've been watching the posts for a while. You seem to be a supportive group with a wealth of knowledge and experience! My 25-year old son was diagnosed with Pure Choricarcinoma, metastatic to the lungs, stage 3c, HCG 196,000, in September. He completed 4 cycles of BEP (minus 3 doses of bleo due to lung problems) in December. His HCG after the first week of his 4th cycle dropped to 4. The next week it jumped to 8 then a week later, 6. The next week 6, then 4 and 4 the next. Initially, when it rose to 8, his doctor thought high-dose chemo was imminent. Now, since his HCG is declining/stabilizing, the plan is to wait and see what happens. They will test his HCG weekly and repeat scans every 3 months. His oncologist is consulting with Dr. Einhorn. I am curious if anyone here has had an experience like this? It has been 6 weeks since his last chemo dose. Is it possible his HCG could normalize without more chemo? His scans show multiple lung masses that have decreased in size.

    Thank you!
    Becky
    Diagnosed Sept 2019
    Pure Choriocarcinoma
    Stage 3c
    HCG 196,000
    Orchiectomy
    BEP x4

  • #2
    choriocarcinoma is very aggressive but until the Bep starts..this continues for a long time when betahcg remains stable..Please keep us informed..Here he has completely survived many Stage 3c diseases..

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    • #3
      I'm not gonna lie, I wince every time I see chorio in a Dx, but it seems like you've got it on the run. With weekly bloodwork they will be able to stay on top of any need for additional treatment so seems like a good plan for now. Please keep us posted either way as you learn more.

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

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      • #4
        Hi Becky. Our experience with Chorio is that it comes back very quickly. What you're describing sounds very stable. For example, my husband's bHCG of 30 was 5400 three weeks later. As another example, after 4 readings of 0, his first positive reading was 195. I know it's all anecdotal, but the HCG numbers can be affected by so many non-cancerous things, such as low testosterone, double counting by the lab, marijuana use, and I'm sure other things. Our oncologist always runs tests to exclude interference from these things.

        On another note, if all nodes are shrinking, that's a good sign!! Best wishes!

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        • #5
          Thank you all for your thoughts and support. We will keep a close eye on the HCG with weekly testing.
          Diagnosed Sept 2019
          Pure Choriocarcinoma
          Stage 3c
          HCG 196,000
          Orchiectomy
          BEP x4

          Comment


          • #6
            Hello Becky, I'm sorry the nightmare you've been through.

            Weekly HCG testing is a great idea and a great way of close surveillance from the doctors (believe me, with our first doctors we didn't have even a MONTHLY test).

            If your son HCG is normal (or almost-so close normal) please, "relax" because you are very aware with weekly test, and enjoy life, IF it raises again, then you'll have to worry, but NOT now.

            Best of wishes.

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