Survivor Spotlight: Alexander Vulchev
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 upstairs. 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 1.5 times 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 4 times 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 beta-hCG and AFP levels, and visit him the next morning with the results. My AFP was within range, but my beta-hCG showed 68,800. I searched for information about beta-hCG levels on the internet at work and I realized 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 removing 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 kind of 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 beta-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 beta-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 knowledgeable of TC. As I read more and more about pure chorio I came to realize that if it had metastasized 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 beta-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 earlier 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 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 before my chemo, I checked my beta-hCG and it read 177,700. Chorio was spreading fast.
I started my first round of BEP at 225,000 beta-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 of 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 definitely working! On day 22 my beta-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 of the treatment, but I handled them pretty well and the chemo actually brought me relief.
At the start of round 2, they measured my beta-hCG at 840, which was higher than the result from the 22nd day of round 1. I thought different labs measure beta-hCG differently, so I didn't think much of this.
Round 2 went well, with typical nausea, loss of taste, some breathlessness, general weakness, and so on. BEP was doing its thing and on day 22 of round 2, my beta-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 beta-hCG was 72. Again, higher than the 40 I measured before. Something was wrong. During the last week of each round, beta-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 by 2 weeks.
My beta-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 beta-hCG got elevated to 542. Still, the chemo managed to get it down to just 7.
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. Beta-hCG would rise 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 wasn't an option. The hematology in my country was the place where they do high-dose chemo with stem cell transplants, so I went to them for treatment. They were very professional 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 Cyclophosphamide (with Mesna) during the first HDC round, and Carboplatin, Cyclophosphamide, and Thiotepa during the second one.
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 definitely working. My beta-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 beta-hCG went up above 100 before I got my next high-dose chemo.
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 girl who didn't 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 that, 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, Cyclophosphamide, 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 beta-hCG. The results were the best thing that ever happened to me. Beta-hCG was <0,1. There was no trace of beta-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 a 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.