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  • Can't seem to kick this

    I've followed this forum for some time looking for anecdotes that resemble ours in search of the patience that it takes to continue battling after all that we've been through. My husband was diagnosed at stage IIIC in March 2019. They fast-tracked him into BEP and performed the orchiectomy. At this point, Dan was coughing up 75 cc's of blood per 12 hours, and shortly after finishing this round his HCG was still over a million. Cancer was found in his abdomen, brain, spine, and bones, and his lungs were 50% tumors. No other organs were affected. He then completed three rounds of VIP (he was switched in anticipation of needing the RPLND and fear of bleomycin toxicity while receiving o2). Though his HCG did not hit 0, the RPLND was scheduled; however, a week before it should have taken place, Dan's HCG was rapidly rising. Within two weeks it was 5,400 again. All scans were negative, so the team suspected that his cancer was microscopic. TICE protocol was started, and he managed all three CE's. After the second, for the first time in 6 straight months of treatment, Dan got an all clear. The third cycle was supposed to ensure that all cancer had been erradicated, and it seemed to be working with a month of clean blood work results. The RPLND took place a few weeks later, and pathology reports came back all necrosis. Then, while Dan was still recovering from the surgery, the HCG started to rise again. Yet again, all scans came back negative, but rather than proceed with a fourth type of chemo, the plan for now is to wait for the cancer to appear on scans in hopes of surgically removing it. We are now in our 11th month of dealing with this, and there is no end in sight. We are extremely pleased with our treatment center, which is a center of excellence, and we're not ready to enter clinical trials or anything like that. I'm here because I would love to hear from others with severe cases that this can still be cured because they now are living cancer free. Has anyone else undergone this much treatment? What was your outcome? What did it take to finally be cancer free? Did anyone's HCG just come down on its own? Thank you so much in advance!
    And, for those just passing through, here's the summary:
    HCG over 1 million
    1 BEP
    Orchi
    3 VIP
    1 TI
    3 CE with stem cell rescue
    RPLND, all necrosis
    HCG rising <1 month after surgery, all scans negative

  • #2
    Hello ERDR,

    I'm really sorry for you and your husband, excuse please because I'm not very good in English and I think you want me to go to the point so:

    How is your husband feeling? Strong is a word you'd use?

    You say his bhCG is elevated again, but the cancer isn't radiologically visible. Please let me ask you: what are the bhCG numbers? what type of test they've done? I mean: head scan and an echo of the other testis, for example?

    I'm asking because sometimes, when the cancer is not visible but it shows through the markers and don't respond well to the chemo they look for it at, what they call (in Spanish) "sacred places", these places are brain and testis.

    You said you are pleased with your center, and this is the most important thing to take care, to be pleased with the center and the doctors who are treating him. This gives you a peace of mind.

    You just wanted some similar cases, so my brother is one similar case. I've started just two posts in this forum, you can search for them and read a bit of his story. But my brother did another chemo later than the HDC, and a salvage surgery after it, and it was more than two months ago and he is fine now. Maybe you think it's "only two months", but it isn't "only two months" for us, and it's two months and counting...

    I remember some cases like ours that ended well, but the only name I recall is jjjw2835, although he isn't online since March 2019. The other name I recall (but it wasn't a choriocarcinoma) is Tarc79, although he is not with us now, it wasn't because cancer and I felt so very very sorry for his lost, I was at Indianapolis with my brother to do the HDC when I knew about it and I cried like a baby girl. He was a true warrior and survivor.

    I read, at least, three more stories of successfully beaten choriocarcinoma with 3th and more lines of chemo plus surgery, but I don't recall their name and they wrote really little.

    I'm sure there are more, but they don't write here (it's hard for me to write here, but I found hope in this forum so many times that I make an effort to be here for others, as you and your husband).
    So, here we are, we undergone with so much treatment (and more) and still be here to keep fighting if needed.

    Just let me give you some advice, in case you didn't know about it, MSKCC have a program named Make an Impact, they can do a genetic test (for free) of your tumour sample, and maybe it can give you some very usefull information about possible mutations of your tumour (in my brother's case, it was positive for c-kit and a new drug called Imatinib was added to his arsenal of possibilities). It can take 6 weeks to be completed, so it's a good idea to do it now, just in case it's needed in a future.

    Here is the link: https://www.mskcc.org/research-progr...gy/make-impact

    Another advice, I'm sure you read it already many times in this forum: please, contact with Dr Einhorn.

    Best of wishes, please keep us updated.


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    • #3
      Te agradezco muchisimo tu respuesta, Hermana, y me alegro que todo les vaya bien despues de todo lo que han superado. Es exactamente lo que habia esperado oir. Con respecto a tus preguntas, se sentiria mejor si no estuviera recuperandose todavia de su cirugia, pero se siente bastante bien. My medical Spanish is probably not strong enough to accurately relay the tests that Dan has undergone since the levels began to rise after the RPLND, but he has had an MRI, ultrasound of the testis, CT of the chest, PET scan, and blood work. Si, hemos repetido el analisis de sangre, y despues de una semana, su HCG subio desde 32 hasta 195. Eso nos paso antes de la fecha original de la cirugia, y dentro de dos semanas mas habia llegado a 5400 (probablemente por el componente de Coriocarcinoma), pero esta vez no vamos a responder tan apidamente como antes, porque nuestro oncologo sospecha que mas quimioterapia no le va a curar, asi que eso solo seria un juego de numeros y demoraria un tratamiento ma exitoso. Nuestro oncologo es colega de Einhorn, y los dos se consultan a menudo. No conocia el programa de Make an Impact, y seguro lo voy a investigar. Mil gracias de nuevo por responderme. Que dios los bendiga!
      Last edited by ERDR; 01-09-20, 07:31 PM.

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      • #4
        Mira lo que pasa cuando escribo la i con tilde, ja ja. √*

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        • #5
          One week HCG rise from 195 to 1250.

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          • #6
            ERDR, my Spanish only allows me to understand some of your responses. It will help us to help you if you provide a translation. That said, have they re-scanned his brain yet since treatment?
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

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            • #7
              Dan finished chemo in November and had the RPLND in December. So far since Christmas we've had a chest CT, U/S of the testis, brain MRI, PET scan, and he's scheduled for an MRI of the abdomen and pelvis and ANOTHER brain MRI next week.
              Last edited by ERDR; 01-10-20, 07:08 PM.

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              • #8
                ERDR, it's seems strange to me that with bhCG = 1250 all his scans are clear.

                My medical English is not good but as we had to translate all my brother's medical reports I understand something. Can I ask you: do you have any scan of his bones? I'm not sure if a TAC or an MRI shows if there is anything in his bones. Again, I'm not medical but with an bHCG of 144 a PET-CT scan showed activity for my brother, so I can't understand your case.

                Keep strong and keep updating if we can provide any further help to you.

                Much√*simo √°nimo y mucha fuerza ERDR. Siento haber tardado en responder, no ten√*a un ordenador a mano y con el m√≥vil me daba problemas.

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                • #9
                  I agree that it seems strange that it remains microscopic when his levels are now over 5,000. Hopefully today's scans will offer some insight.
                  Y gracias por responderme, hermana. O tarde o temprano lo aprecio bastante

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                  • #10
                    ERDR, Please upate us when the new scan results are in. This is a real head scratcher.
                    Jan, 1975: Right I/O, followed by RPLND
                    Dec, 2009: Left I/O, followed by 3xBEP

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                    • #11
                      I don't think that with bhCG = 5000 cancer is microscopic.

                      I can recall a case in this forum that with an elevated bhCG (don't remember the numbers) and clear scans, his doctors did a scan of his bones and they found cancer there, maybe it was the case of jjjw2835? I can recall some mets at the hips bones... or something.

                      Please update with the results and if all the scans are clear again, what explanation do your doctors have?

                      Bones? Laboratory errors? I can't remember another case with >1000 bhcg and clear scans.

                      Best of lucks, un fuerte abrazo y mucho √°nimo.

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                      • #12
                        So the MRIs of the brain, abdomen, and pelvis all came back clear. Regarding the bones, There was cancer found in his bones that was resolved, and no further growth in the bones has been noted. Gemox will start next week.

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                        • #13
                          There are situations I have seen of very disseminated disease where a sire of the cancer is not seen. I'm personally glad they stated GEMOX and you can see if that helps the markers vs. waiting further.

                          Mike
                          Oct. 2005 felt lump but waited over 7 months.
                          06.15.06 "You have Cancer"
                          06.26.06 Left I/O
                          06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                          06.30.06 It's Official - Stage I Seminoma
                          Surveillance...
                          Founded the Testicular Cancer Society
                          6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                          For some reason I do not get notices of private messages on here so please feel free to email me directly at mike@tc-cancer.com if you would like to chat privately so as to avoid any delays.

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                          • #14
                            I'm so glad they're going to start chemo, best of lucks with GemOx.

                            My brother did Gem+Tax (no Ox) and it was the best tolerated chemo for him.

                            And just 1 day a week... Os deseo todo lo mejor, muchisima fuerza.

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                            • #15
                              Gracias, Hermana!

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