Jeremiah Ray - Dr Einhorn, Salvage Chemo, & Future Steps
I’m off to see the wizard, the wonderful wizard of… Indianapolis?
When I was first diagnosed with testicular cancer I had heard very little about it. To me, and similarly with many, I knew of it and/or heard about in connection with Lance Armstrong. Even when I told people, the most common response was, “oh yeah, didn’t Lance Armstrong have that?” Yes, he did. However, had he been diagnosed a few decades prior, the outcome of his battle with testicular cancer might not have been as positive as we all know.
After my diagnosis I read everything I could about testicular cancer: from survivor stories, to medical journals, to crazy, borderline conspiracy theories on why it (cancer in general) exists. I wanted to know – I needed to know. That is my nature and, admittedly, my inquisitiveness is sometimes to my own detriment… it is, at the end of the day, who I am.
Anyways, it seems that, regardless of where my searching lead, one name kept appearing: Dr. Lawrence Einhorn. Why? Because he changed the game – no, seriously! Before Dr. Einhorn, a testicular cancer diagnosis was, essentially, a death sentence. He revolutionized how it was treated and, today, oncologist jokingly reassure patients, “if you had to choose one type of cancer to get, testicular cancer is it!” Yes, it’s a strange thing to say. But testicular cancer boasts such amazingly high cure rates, in large part, to Dr. Einhorn.
Dozens of people in various support forums and online communities told me that I had to write to “Dr. E.” So I did. On Saturday I sent him an e-mail. It was brief, to the point and highlighted where I was in my journey and that I needed his advice. See, when I was first diagnosed I handed over the keys, for lack of a better term, to the oncologist. I was sick, very sick, and I put my faith my doctor and his team. When I was faced with a recurrence I started to wonder a lot. That is NOT to say that I lost faith in the doctor treating me – certainly not! I respect my oncologist’s opinion and genuine care, for me, very much. Though, I also started to wonder about his approach to dealing with what was being labeled a “recurrence” of the same cancer/germ cell tumor. When I wrote to “Dr. E.” I expressed these worries. In a straightforward, almost clinical way, I put forth everything from my initial seizure to the recently discovered growing nodule in my right lung.
About three hours after writing to him my phone rings. “Yes, this is Lawrence Einhorn. May I speak with Jeremiah Ray, please?”
Two days after our phone conversations I am telling my nurse, who has to sign off on my treatment, that I will forego chemo this week (what would have been my 2nd week of “salvage chemo”), I’m gathering every, single bit of medical data about my case I can gather on such short notice, having yet another CT of my chest (per Dr. E.’s request, for comparison), and booking tickets to Indianapolis (April 4 - 7, 2017).
What I want is reassurance. I want to know that the steps I’m taking are the right ones. I don’t want to find a fountain of youth or be given a promise that I’ll live until a ripe old age. More and more so I believe in here and now. And, here and now, I want to know that we’re not just shooting in the dark hoping to hit something. Here and now, I want to know that the extremely toxic chemicals I’m subjecting my body to are the right ones. I want to make an informed decision about my future. I want the scale to tip; more answers and less questions.
My meeting with Dr. Einhorn was very nice and informative. He is genuinely kind hearted and his care is evident! I feel truly honored to have met him! Dr Einhorn said that, in his medical opinion, one round of salvage chemo was sufficient to get the ball rolling and move onward to high dose chemo with tandem stem cell transplant.
He told me that high dose chemo with tandem stem cell transplant is the only route for a potential cure. Because the nodule on my lung has grown considerably over the past few months (3 months / the time between scans) this rules out the possibility that it is a teratoma. I had this sneaking suspicion prior to our meeting, as my own research told me similarly, that teratomas are usually (very) slow growing – not, as is the case with the lesion in my right lung, about 2cm over 3 months. A biopsy would reveal this as well. A full surgical resection, which was also what I was hoping for, would take care of this one particular lesion and, for safety sake, some surrounding tissue. However, as he said, this wouldn’t be a cure-all. As he said, it would take a miracle for this to be the be-all & end-all of the disease. More so, because of this particular type of nonseminomatous germ cell tumors, the very nature of which is systemic, the body (in its entirety) needs to be treated – IE, with a stem cell transplant.
I was prepared for this. As mentioned I didn’t want, nor was I seeking, a magic pill he’d have stashed away that would rid me of this nightmare. I was merely seeking reassurance in what other doctors had told me and the path they were proposing. I needed this to come from someone who had extensive experience in this area, whose life work is, and has been, testicular cancer.
That being said, I'm still shocked and saddened, and frustrated.
Dr Einhorn said that, in his medical opinion, one round of salvage chemo was sufficient to get the ball rolling and move onward to high dose chemo with tandem stem cell transplant. I was initially scheduled for 2-4 rounds of VeIP (salvage/2nd line chemo). Which means I would have been in treatment this past week. Though I am naturally scared of the stem cell transplant, I am glad I don't have to undergo another round of outpatient chemotherapy. Salvage chemo just feels like you're buying time, trying to gain momentum... It's working towards something but not yet there 100%... it's like a layover in a shitty airport and your connecting flight info hasn't posted yet. Waiting. Hoping. Trying to keep sane.
I did get some questions regarding the stem cell transplant, so I will try to clarify. I will be undergoing an "autologous" stem cell transplant. Basically, prior to high dose chemo, blood-forming stem cells are harvested. Then, I will be given high doses of chemo to kill the cancer. However, and this is partly the point, this will also eliminate the blood-producing cells that are left in the bone marrow. Since this is tricky and rather risky, this is done as inpatient. Naturally, with low white blood cell counts (do to the destruction of my marrow) I will be more susceptible to diseases and such. After the administration of high dose chemo, the stem cells, my own stem cells, that were collected beforehand, will be returned. They will immediately start rebuilding and replenishing my marrow.
Jeremiah Ray
TCAF Ambassador