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Stage 3c Pure choriocarcinoma - my story

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  • Axel
    started a topic Stage 3c Pure choriocarcinoma - my story

    Stage 3c Pure choriocarcinoma - my story

    First, I want to thank you all. I've been reading this forum for a long time and it has helped me tremendously.

    It all began with an uncomfortable feeling in my left testicle, it was as if I had a small hard marble inside of it and it somewhat hurt when i walked and ran. I didn't think much of it back then, just made sure I don't wear tight clothing in that area. It didn't go away. I began having trouble sleeping and was tired most of the time, also I noticed I was out of breath when I climbed up stairs. As a 2 pack/day smoker, I attributed it all to the cigarettes and tried to cut down my smoking.

    It was when I noticed that my testicle was enlarged, around 1.5x normal size and hardened, that I finally got a little worried. Of course, the last thing a young man thinks of is cancer, so I thought it was something harmless and went to visit a urologist. However, it was august, and all the urologists that I called were on vacation, so I had to wait 2 weeks until I made it to a doctor's office. By the end of those 2 weeks my testicle was around 4x the normal size in volume and I was feeling worse - I was getting very few hours of sleep each day, I started having hot flashes frequently and I was sweating during the nights and sometimes when I was eating certain foods.

    My urologist immediately sent me to test my hcg and AFP levels, and visit him the next morning with the results. My afp was within range, but my hcg showed 68 800. I searched information about hcg levels on the internet at work and I realised that this meant I had cancer.

    I found out the cure rate was 95%, and if caught early - up to 99%, so I prepared myself for a tough fight, but a fight I will most likely win. My urologist confirmed I had cancer and suggested to remove it immediately, and just 4 days later I was in hospital awaiting my surgery. During those 4 days I got a nasty pain in my lower back that was getting worse every day, so I was kinda looking forward to getting my nut cut off for good. My testicle has grown to the size of my fist at this point, it was huge.

    The surgery went well and it brought me some relief. However, soon my insomnia came back. I lost my ability to sleep. Later I found out that because the hcg is similar in structure to the thyroid stimulating TSH hormone, the thyroid was stimulated to produce insane amounts of T3 and T4 hormones, which led to my loss of sleep and general exhaustion. It's hard to describe the effects of getting less than 1 hour of sleep every day for a long time. The hcg in my body was exhausting my energy, and due to the hormonal imbalance I was experiencing hot flashes constantly. The severe lack of sleep was devastating.

    I was told I had pure choriocarcinoma, the deadliest of all types of TC. I was reading constantly and trying to figure out what that meant and slowly I was becoming more and more knowledgable of TC. As I read more and more about pure chorio I came to realise that if it had metastised inside my body, I was most likely going to die. The best way to check if I still had cancer in me after the surgery was to measure my hcg. So I did.

    The result came back 57 700 - I still had cancer and a lot of it. I needed chemo, fast.

    I contacted an oncologist and went to him to figure out what we can do about this. He was unsure of how to treat pure choriocarcinoma and proposed to start me on a methotrexate-based regimen. Well, at this time, I was already aware that methotrexate was NOT the way to do it. I knew I needed BEP as first line treatment, so I left this "doctor".

    I went to the national oncology hospital, and they decided to start BEP. When would my treatment start? Almost a month later! I couldn't get an eariler date and it got me even more worried. A month would give the choriocarcinoma the chance to spread substantially and metastasize to other places, including the brain. On top of it all, the BEP protocol consists of 21-day cycles, but the oncologists here wanted to do 28-day cycles, which I knew would give my cancer more time to become resistant to chemo.

    So I waited. Weeks passed and my health was declining rapidly, mainly because of the insomnia. I couldn't sleep at all. I was just passing out for 15 minutes at random times during the day and regaining consciousness, drenched in sweat. A lymph node in my neck (supraclavicular node) grew in size and hardened. Days prior to my chemo, I checked my hcg and it read 177 700. Chorio was spreading fast.


    I started my first round of BEP at 225 000 hcg. They forgot to give me a CT scan before the chemo, so I didn't know where my tumors were.
    My first concern was the "choriocarcinoma syndrome" - As chorio cells die, the tumors bleed profusely which can lead to complications and even death. On the second day ot BEP I was coughing blood which horrified my doctors, but it wasn't a big issue, I took it well. Around day 15 of round 1 BEP they finally called me in for a CT scan. At this point I knew my lungs were full of cancer, there's no way chorio wouldn't have gone there. My main fear was: did it spread to my brain?

    The results from the scan showed multiple tumors in my lungs (more than the doctors could count) up to 3.5 cm, and 4 enlarged lymph nodes (over 2 cm in size). No tumors in my brain.

    The chemo was definately working! At day 22 my hcg was measuring just 642! I could now get 2-4 hours sleep each night and was feeling better, despite the side effects from the chemo. Most people fear the side effects from the treatment, but I handled them pretty well and the chemo actually brought me relief.

    At the start of round 2, they measured my hcg at 840, which was higher than the result from 22nd day of round 1. I thought different labs measure hcg differently so I didn't think much of this.

    Round 2 went well, with the typical nausea, loss of taste, some breathlessness, general weakness and so on. BEP was doing its thing and at day 22 of round 2, my hcg was down to just 40. I knew of only 2 cases of chorio cured with BEP in all the literature I found, but it gave me hope... maybe it would work for me too.

    Round 3 started with hcg=72. Again, higher than the 40 I measured before. Something was wrong. During the last week of each round, hcg was rising and this was a really bad sign. On top of this, it was December and my doctors told me the oncology won't be working during the Christmas holidays and New Year's Eve, so I'd get my fourth round 35 days after the beginning of round 3. My treatment got delayed with 2 weeks.

    My hcg went down to 15, and then, a week later, rose up to 42. BEP wasn't working anymore. Treatment has failed. I had refractory choriocarcinoma by Dr. Einhorn's definition. There was no point in continuing with 4th round of BEP, but my doctors insisted on it to "complete the protocol in the paperwork".

    By the time I started round 4, my hcg got elevated to 542. Still, the chemo managed to get it down to just 7.

    (continues in the next post...)

  • Davepet
    Might be worth checking testosterone if it goes up again.

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  • Axel
    I am measuring my hCG regularly every 2 months now and it has always been <0.2 (undetectable). However, on August 2nd (26 months after my remission) it turned out 8,6 and, of course, it got me scared. I did another bloodwork the very next day to check if it's a lab error and tested my AFP as well - maybe it was a second cancer in my other testicle. This time, my hCG measured 5,9. It's unlikely for pure chorio to behave this way and maybe I didn't relapse. I kept checking my hCG frequently and here are the results:

    2nd August = 8.6
    3rd August = 5.9
    6th August = 2.9
    9th August = 1.5
    16th August = <0.2 (undetectable)

    What could've caused this transient elevation? A dermoid cyst? Low T levels which cause elevation in LH and the LH was falsely confused for hCG? I don't use marijuana.

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  • Axel
    Mike, I'm from Bulgaria and I got all my treatments here.
    I believe it's very important for anyone dealing with TC (or any other cancer for that matter) is to take an active role in their fight. You said it perfectly. If I hadn't done that, I'd certainly wouldn't be here right now.

    I met a lot of people during my treatments and a vast majority of them didn't even want to think about their cancer, let alone be informed or take an active role in their treatment. Positive thinking is a great thing, but I don't think it means ignoring your condition. Sometimes just thinking everything is going to be allright is not enough.

    Mike, I got your message in my inbox but I'm having issues with this site, including replying and posting. I'll get in touch.

    BrendanF, thank you for sharing your experience too and I'm following your thead closely. I hope you're keeping your head high in your situation and wish you all the strength needed to go though the treatments.

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  • BrendanF
    I have to agree with Mike. Reading Axel’s story reminded me of past experience of my own and other family members that were not nearly as bad, but where advocacy made a difference that likely prevented much worse outcomes. It’s important too to have others advocating if things get to a point that you’re unable to advocate for yourself.

    Sorry for all you’ve been through Axel but very glad you’re with us to share your experience

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  • Mike
    Wow Axel, what an ordeal to go through. Yet, a perfect example on why it is so important to take an active role in your care and to be your own best advocate.

    In which country did you receive treatments?


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  • Axel
    Thank you, Davepet.
    Yes, fortunatelymy scans so far have been clear and my hcg remains undetectable. I sure hope it stays that way.

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  • Davepet
    Wow Axel, you've been through the wringer & came out the other side! I assume you've had clear CT scans & your hcg remains low? in any event, welcome to the forum.

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  • Axel

    After reading many articles and devoting as much time as I could to learn more about pure chorio, I knew my odds quite well. The only thing that could put me in remission was HDC, everything else was a waste of time and giving the cancer the chance to get resistant to platinum-based drugs. I knew this, but my doctors didn't seem to, or just didn't care. Not one of them even mentioned HDC. I brought it up, after they offered me the TIP protocol as second line treatment. They would do it in 28-day cycles (not proper 21-day ones) and it was very clear to me, the result would be the same. Hcg would rise up before the start of every cycle with little to no chance of curing the cancer.

    The doctors told me, if I wanted to go through HDC, I should get it arranged myself, so... good luck. The procedure was very expensive and needed a lot of time to prepare treatment in other countries, so this wan't an option. The hematology in my country was the place where they do high-dose chemos with stem cell transplants, so I went to them for treatment. They were very proffessional and took my case to heart. The main problem was - money. Health insurance paid for treating people with blood and lymph cancers (leukemias and lymphomas), but in my case I was supposed to pay for it myself. I didn't have the money, and there was no way I could get it in time...

    Long story short, I managed to get the Minister of the Health Department in my country to finance the HDC with government money. I was going to get HDC and they harvested my stem cells as soon as possible.

    I wanted Dr. Einhorn's protocol (tandem HDC with Carboplatin and Etoposide) or the TI-CE protocol, as those were the most used regimens worldwide, but couldn't get the doctors to discuss it with me. What they chose for me, was a protocol from 1995, called SWENOTECA IV. A tandem high-dose chemo with autologous stem cell transplant with different combinations of drugs - quite a toxic regimen. It consists of high doses of Carboplatin, Etoposide and Cyclophosfamide (with Mesna) during first HDC round, and Carboplatin, Cyclophosfamide and Thiotepa during the second one.

    HDC 1

    High-dose chemo is no joke, but the first round went well. As my platelets' numbers pummeled, I got quite a few infections and it was nasty, but the medical team dealt with all of them. HDC is very different than the BEP regimen and it is much, much worse. But I handled it pretty well and was happy when I was discharged for a week to rest and prepare for the second round.

    The treatment was definately working. My hcg went down to just 1,14 - well within the normal range (0-2). However, it soon started going up fast, at an even faster rate than before. The numbers seemed to be doubling every 24 hours! My second HDC round got delayed because of one doctor's negligence, and my hcg went up above 100 before I got my next high-dose chemo.

    HDC 2

    This one went horribly wrong.

    As they started my treatment, I noticed they were pumping me with Etoposide. Etoposide was not part of the second HDC round according to the protocol. I told the nurse to stop the drug and wanted to speak to a doctor. She didn't stop and until I got the chance to speak to a doctor, i was getting quite a huge dose of Etoposide in my blood. The doctor was a young distracted girl who didn't even admit her mistake, but immediately told the nurse to stop the Etoposide and start with the proper drugs, as if nothing happened. So, because of her mistake, I was getting a cocktail of 4 drugs, instead of the 3 which I was supposed to get. I was getting high doses of Carboplatin, Cyclophosfamide, Thiotepa, and one day of Etoposide, which made the treatment extremely toxic. I was constantly having problems with my organs' functions. My liver, kidneys, stomach and all of the digestive system, lungs...

    Then came another mistake, made by another young doctor. She wanted me to drink additional Potassium, which I needed. But she gave it to me in pills that dissolve in water and form a very fizzy drink. My stomach lining was damaged badly by the chemo. Drinking the fizzy drink was painful, and it ripped an opening in my stomach wall, which caused internal bleeding. As my platelets were very low, the wound wouldn't heal and I was about to slowly bleed to death.

    Having a torn stomach is very painful and even morphine couldn't stop the pain. One of the doctors delicately told me that there was a high probability that I wouldn't wake up the next morning, or any other morning... They amped up the morphine and I lost consciousness...

    But I did wake up the next morning. One of the lead doctors there didn't give up on me and made every effort to save my life. He tried to stop the bleeding with a new expensive drug, which my father quickly bought to try and heal the wound in my stomach. The wound healed slowly and very painfully, but this new drug did the job.

    I couldn't eat or drink for weeks as the systems kept me alive, until I was ready to be discharged. I left the hospital unable to walk, extremely skinny, just a skeleton with skin on top of it, like those Auschwitz victims I've seen in documentaries.


    When I got home, a lab worker came over to draw blood and check my hcg. The results were the best thing that ever happened to me. Hcg was <0,1. There was no trace of hcg in my blood. I was finally in remission.
    It took me months before I could eat and drink normally, and gain some healthy weight. As soon as I could, I started going to the gym and trained moderately.

    Now, more than year and a half later, I'm in peak physical condition. I still have tingling pain in my toes (peripheral neuropathy) and some loss of hearing because of the treatments' toxicity, but that's a small price to pay.

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