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  • ERDR
    started a topic Can't seem to kick this

    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

  • ERDR
    replied
    Hermana, no sabes el alivio que siento al ver que estais bien a pesar de la pesadilla de este virus. Tambien nos encontramos bien pero nerviosos por todo lo de mañana, como Dan ira al hospital por su quimioterapia y ya hay varios casos alla, y ademas, dentro de unos dias nos enteraremos de como va su tratamiento. Por la prevalencia de Covid 19, mi esposo no ha ido por pruebas de sangre desde has 3 semanas. Entonces, las buenas noticias que publicaste nos alientan. Respecto a la cuarentena, afortunadamente somos profesores, y nuestro estado ya ha cancelado las clases en vivo a favor de clases virtuales, asi que ya pasamos dos semanas ensenando desde la casa, y es posible que sigamos asi hasta junio. Espero que Espana tambien decida extender la cuarentena para que puedan quedarse sanos y salvos. Os deseo los mejor, y que sigan las buenas!!

    Leave a comment:


  • Hermana
    replied
    Hi ERDR,

    How is everything? I hope you bring us good news soon.

    Leave a comment:


  • Hermana
    replied
    Hola ERDR,

    Espero que esteis bien los dos, y que tu marido se encuentre con fuerzas y animado aunque se que es dificil, mucho.

    En estos momentos en los que el mundo tiene toda la atencion puesta en el coronavirus se vuelve todo mas dificil todavia.

    Nosotros estamos confinados en casa desde hace 1 semana y un dia, el gobierno de España nos dice que estaremos unos 22 dias mas (1 mes en total), pero yo creo que sera mas tiempo, al menos mes y medio, pero ojala me equivoque.

    Cuidaos mucho, espero que vuestros gobernantes tomen en serio el virus, antes de que se desborde y desborde los hospitales y a la sociedad.

    Disculpa si no leo el foro tan a menudo, a veces me cuesta entrar aqui... por favor enviame un email si necesitas contactar de inmediato, no tengas reparos en hacerlo.

    Os deseo lo mejor, mucha fuerza y animo, con todo mi corazon.
    Last edited by Hermana; 03-26-20, 06:46 PM. Reason: Grammar errors

    Leave a comment:


  • ERDR
    replied
    Gracias, Hermana, por tu positividad. Queria preguntarte como estabas. Estas en cuarentena? Por lo que hemos visto en noticias internacionales, en mi estado lo tomamos muy en serioy todo el estado esta en cuarentena, menos los que todavia no lo creen tan grave como es. Ya hay varios casos del virus en el hospital que trata a mi esposo, incluso unos doctores y enfermeros. Han pospuesto el tratamiento de mi esposo, solo unos dias, y le dijeron que no se preocupara por las pruebas entre tratamientos. Por eso, no sabemos donde quedan los numeros. Se que no visitas este sitio con tanta frecuencia, pero estare ansiosa por saber que estas bien!! Cuidate y que se cuide tu hermano tambien. Abrazos!

    Leave a comment:


  • Hermana
    replied
    ERDR I'm so sorry I took a week to read your message. I have questions for you:

    - did they redo the test in this week?
    - any news?

    And I have some comments:

    - hcg goes up in some patients when the tumor leaks into the blood, and this means the tumor is dying. Yes, it is true that at first his bHcg decreased, but I think that for a single rise you should not be alarmed. There must be a continuous rise to start thinking about other possibilities.

    - Several months ago I found two post of two guys cured with Gemox (there are more, just look for the statistics), but now with a rapid search I can't find them. Anywhere they exists so please trust in treatment if it's working. These guys write very little in this forum and it's hard to find their posts, I'll keep searching.

    If you think in the worst escenario, and the Gemox don't work anymore, did you know if the tumour are resectable?

    Another question: did you do the gen test of the tumour sample? Do you have any results?

    Best of wishes to you.

    Leave a comment:


  • ERDR
    replied
    Thank you both. Just before Dan's second cycle of Gemox, on Monday his HCG was 110 and it was 141 on Wednesday. He is two thirds of the way through cycle 2, and his oncologist agreed to run his HCG today, so we will be holding our breath as we await the results. Has anyone on here reached a cure through Gemox? Has anyone had Gemox treatment discontinued after an initial response that just stopped working? I definitely preferred to have testing run weekly to this every three weeks protocol.

    Leave a comment:


  • Hermana
    replied
    I am following your journey, for sure. I read that it will take 2-3 months to know if GEMOX is working But I see that it’s working sooner than that, so BIG BIG GOOD news. I’m so happy for you...

    My brother had a port too, one day the chemo begun to burn and he had to use it too.

    Please, keep posting, I’m here and I’m reading. Best of wishes

    Leave a comment:


  • biwi
    replied
    Good idea on the port. Glad to hear it seems to be responding!

    Leave a comment:


  • ERDR
    replied
    I realize that no one is following this now, but considering how many stories I have searched in hopes of similar situations, I will continue to post updates. Dan started his second cycle of Gemox yesterday. He opted for a port due to the burning nature of this med and his shot veins, and that has offered some relief. After the three week cycle, his HCG is down to 110, so we are hopeful that the response will continue.

    Leave a comment:


  • ERDR
    replied
    Dan's HCG was up to 1100 two days later. Gemox started on Wednesday, and it's not the easiest regimen though it's far less frequent than any other chemo that Dan has endured. The strangest side effect is a sharp stabbing pain whenever touching cold, meaning walking on the bathroom floor in the morning, getting food from the fridge or freezer, breathing in cold air, and cold beverages can cause a response that closes his throat. It's lasted four days so far but is improving a bit. The effects are supposed to be cumulative, so it may last longer in subsequent treatments. It will take 2-3 months for us to know if the GEMOX is even working, and it could stop being effective at any point, so this is really difficult for our whole family. Pathology on the lung tumor, as expected, was 100% choriocarcinoma.

    Leave a comment:


  • Hermana
    replied
    I’m so so sorry, I hope he starts GEMOX as soon as possible, and please do the genetic test of the tumour they got from the last surgery, it may add more types of drugs to fight against the cancer.

    Leave a comment:


  • Mike
    replied
    So sorry to hear about the increase. Did they verify that it was accurate or are they repeating it weekly?

    Mike

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  • ERDR
    replied
    That bubble burst. HCG 700. We are back to the options of GEMOX or clinical trials.

    Leave a comment:


  • ERDR
    replied
    Strangely, the numbers were already dropping leading into surgery, but the tumor was a clear tumor (still awaiting pathology). He was around 2,600 right before surgery, and he is down to 178 as of yesterday!! It's been almost an entire year of treatment. In fact, February is when Dan felt the first symptoms of his cancer - nausea, then urinating blood, then coughing up blood (75cc per 12 hour period upon admission). And now, for the first time in a very long time, we may actually be looking at a cure!!

    Leave a comment:

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