I’m trying to raise money for my Dad, who desperately needs a follow- up cancer treatment.
I brought him from Russia, hoping for a quick recovery, but it has been two years since his lung cancer and now we are battling with brain cancer.
The ONLY medication that will help my Dad for his type and stage of cancer is Keytruda ( Pemrolizumab ) which is a very expensive new drug, recently approved by the FDA. I CAN’T afford another treatment because I have already gone through all of my savings.
The good news is that the therapy we’re doing WORKS and we MUST continue treatments on schedule!!!
If everyone reading this right now gave a dollar, my fundraiser would be done within a day.
Your support means so much to me and my Dad!
Even a small offer would be acceptable and worthwhile to my father and me.
While working as an engineer on a ship in Spain in June 2015, my 55-year-old dad Alexander Volkosh started coughing blood. He managed to have some chest x-rays done soon afterwards, and that was the first time a doctor told him he might have lung cancer. One month later, when he returned home in Russia, he did a CT scan, which confirmed a mass near his trachea. Doctors in Russia didn't seem to be very qualified to address the issue, and so I decided to get a second opionion at Mount Sinai Medical Center in Miami Beach, where I live.
A few days later, a thoracic surgeon did a biopsy on him, and confirmed a Stage IIIb lung carcinoma, with a fairly negative prognosis. In addition to this terrible news, as a foreigner he didn't have any access to insurance, which meant all therapies would cost tens of thousands of dollars out of pocket. Even though we didn't have much savings, this wasn't the time to wait and so we decided to somehow move forward with the best concurrent chemoradiation therapy the doctors in Miami recommended. We ended up spending all lifetime savings and taking on credit card debt too.
A couple of months later, when both chemotherapy and radiotherapy ended, we started to see what else we could do, to further improve his chances of survival. After reading much about the subject, we found out that several pharmaceutical companies were in the process of testing new experimental immunotherapy drugs and we tried to contact all hospitals that were participating in clinical trials with them. Requirements were very strict and timing tight, but we eventually managed to get him accepted at the Cancer Insitute of New Jersey. The clinical trial gave him free access to Keytruda, a very expensive drug that would have otherwise costed $100,000, but we still had to pay for everything else. In practice, considering all required scans, infusions, doctor visits, flights back and forth between NJ and Russia, hotels, food and so on... each session still costed many thousands of dollars. The trial required one session every 3 weeks, so my dad couldn't even work in the meantime. The last time he worked and received a salary was in Spain, many months earlier.
The clinical trial continued for several months, with my father and mother flying back and forth from Russia, and me flying from Miami, to help them with the language.
Sometime in early 2016, while he was at home in Russia, after having spent tens of thousands of dollars on the trial, my dad started to develop some strong side effects from the experimental drug. He experienced severe shortness of breath and had to be rushed to the hospital. The doctors there diagnosed him with pneumonitis, a potentially deadly lung condition that must be urgently treated with massive doses of steroids. During the weeks he spent at the hospital, he had a ruptured bulla, pneumothorax and part of his lung collapsed. Doctors had to drain air out of this chest with a tube and they were telling us they weren't sure if he would survive.
Eventually, he made it, but because of the clinical trial protocol, he could not resume the immunotherapy. Still, doctors explained that even the amount of the drug he had received until then would be helpful and that his immune system would be stronger than it was before the trial.
During the following months, Dad fully recovered, started to look for a job, and did all the required follow-up CT and PET scans. Everything seemed to indicate that he was completely cancer free and we just kept praying for the best.
Unfortunately, because of his medical history, and the fact that many companies are unwilling to hire a 57-year-old person, it almost took him one year to find a new job.
Finally, in June 2017, he got a job on a ship in Kaliningrad, near Poland. He immediately went there and started working for the first time in almost 2 years. Everybody was very happy and we thought we were finally seeing the light at the end of the tunnel. This excitement didn't last long, unfortunately. A few weeks later, Dad was sent back home, because he couldn't stay awake normally and behaved in a strange way. My mum was very confused by his actions and didn't know what to think of that. She started to get very worried and I decided to go to Russia to help them. A few days later, he seemed to have trouble remembering recent events and, at some point, even recognizing us. We immediately understood something was wrong and decided to go to the hospital.
An MRI of his brain soon explained all of his recent behavior: there was a 30mm mass right in the center of the brain, pushing against his thalamus and optical chiasmus. Words can't describe how shocked we felt that day: how could this be happening again!? Because of the location of the tumor, the radiologist advised us to go see doctors at the local CyberKnife center, which uses radiation, instead of traditional surgery, to destroy tumors in delicate areas. When we went there, the head of the center explained how they could treat him. He said that after the treatment my father would probably get paralyzed and lose his vision, and that there was also a chance that the tumor wouldn't get completely destroyed. Still, he asked for almost $10,000 for the therapy and further required that we go talk to a neurosurgeon he recommended.
When we went to talk to the neurosurgeon, we immediately noticed something was wrong. Several doctor friends and the radiologist agreed that a tumor in the middle of the brain wasn't surgically operable, but this neurosurgeon was more than willing to do so. He explained that he couldn't guarantee any results, yet asked for a $12,000 cash payment and recommended a follow-up radiation treatment with the CyberKnife doctor.
Time was passing and Dad's symptoms were worsening, he wouldn't remember what had happened 5 minutes earlier. We decided we had to do something as soon as possible, and so we went back to the CyberKnife center and told them we wanted to start treatment right away. What happened afterwards might sound incredible to many of you, but it's unfortunately very common in Russia. The doctor there told us that they couldn't start the treatment, unless his friend neurosurgeon explicitly wrote a statement claiming that he wasn't willing to operate my Dad. Needless to say, the neurosurgeon insisted that he could do the surgery, and aggressively requested the $12,000 cash payment again. Long story short, it became clear that these doctors would routinely help each other, referring desperate patients to each other and trying to extort cash from them, for surgeries that they couldn't and perhaps even wouldn't perform. In other words, the only doctors who somehow could help us, were just looking for bribes and didn't care at all about the health of my dad.
At that point, I thought about the doctors in the USA who had already helped us two years earlier, and quickly sent them all medical records.
Within less than a week, we were all back at Mount Sinai Medical Center and my dad was being treated with state-of-the-art stereotactic radiosurgery for his brain cancer. Once again, we had to take on more debt, but at least we knew that we were in good hands, and we could trust the doctors.
Once the treatment was over, we again tried to explore additional therapies, to try and maximize his chances. By then, Keytruda was an FDA approved drug and we tried again to see if we could have access to it. Thanks to the pharmaceutical company and the doctors involved, we again managed to have a free supply, even though of course all other expenses are our responsibility.
In early September 2017, Dad started a new cycle of the immunotherapy drug, which will be administered every 3 weeks. He's still without a job of course and, even though his short-term memory has improved since July, he still needs lots of help in day-to-day activities. He easily gets confused and is sometimes unsure about what's happening or where he is. Hopefully things will go back to normal soon.
The goal of this campaign is to try and recover some of the many tens of thousands of dollars we spent over the past 2 years, trying to fight his lung and brain cancers. He will probably be unable to work ever again and we have credit card debt and many other expenses to pay every month. We don't know yet how much more money will be necessary for his health and if all these treatments will eventually succeed in completely destroying his cancer, but we try to stay positive and hope that someone will be able to help us in our struggle.
Thanks for reading so far!
Inga, Alexander & Marina
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