I don’t have words to adequately thank the friends, family, acquaintances and friends of friends who showered us with love and support over the past year. Your kindness and generosity are unmatched and we could not have gotten through this year without your unwavering support. So many times, your wonderfully overwhelming generosity and love have moved me to tears.
Despite having drawn the short straw with undetectable late stage cancer in my twenties, I feel that I am one of the luckiest guys in the world because I have such amazing people in my life. Thank you so much for all that you’ve done for Allison and me and our family during this immensely hard year. Please forgive me for lacking the ability to concretize my thanks in a way that even begins to scratch the surface of the gratitude for your kindness that I feel acutely every day.
I also want to give you an update and about how I am doing. Generally, I’m doing well in terms of my recovery from the stem cell transplant. I’m able to exercise and I am slowly getting back into the office. The challenging part is that it’s not “over,” which, for me is hard to come to terms with. After going through the hell I’ve been through, it feels like it should just end abruptly and vanish from my life, but that’s unfortunately not a reality. I’ve completed some awful treatment and the really bad stuff, more likely than not, ended with the stem cell transplant. People keep asking me, “so, you’re good right?” (and don’t feel bad if you’ve asked this, it’s OK). I don’t know how to answer that question. If you have one cell of the disease, you have it. It’s very black and white and unfortunately, the scans can’t tell definitively if something is hiding in there. So, for the next year or two, it’s going to be a game of sit and wait. With each clean scan, I’ll get further and further out of the woods.
THE GOOD NEWS is that I had a CT scan in late October, which was promising, but inconclusive. All of the masses in my chest are completely gone and my lymph nodes look normal. I did not have a PET scan, because in the few months post-transplant, PET scans aren’t reliable and give a lot of false positives. I’ll have a PET/CT scan in a few months to see how I’m doing.
The week I was released from my transplant hospitalization (good freaking timing), the FDA approved an antibody therapy called Brentuximab Vendotin (BV) for HL patients at a high risk of relapse post SCT, which according to my SCT doctor, improves the likelihood of “progression free survival” (aka cure) by up to 20%. That’s pretty damn good and means that I’ll be in the up 70%-80% likelihood of cure range with BV. My general oncologist stresses that the stats aren’t particularly meaningful, because they represent mostly people who have been highly resistant to chemo (the disease got worse during treatment) and people who are much older and/or in poor physical condition, both of which are not me. When I started the first line of treatment (AVBD chemo) I had a TON of disease and it was all over my lungs and in my neck. By the time I finished the AVBD, I was in remission and had virtually no disease. My general oncologist believes that I may have been cured with a few more cycles of AVBD, but, unfortunately, the protocol is to draw an arbitrary line at 6 cycles and move onto harsher treatment if scans aren't completely clean.
So, now the plan is to do a year of BV treatment where I will go in every three weeks for an infusion and complete 16 cycles. BV is chemo, but has low toxicity and only targets cancer cells, unlike regular chemo, which kills everything. It supposedly is unlikely to be meaningfully disruptive to my life other than having a long doctor’s appointment once every three weeks. I had my first BV infusion on November 2 and it was fine. I felt a crummy for the rest of the week and am not sure whether I had a bug or whether the treatment made me feel sick. As I’ve been doing for the last year, I will continue to play it by ear, see how I feel next cycle and adjust as needed. Also, the potential side effects (fatigue, hair-loss, peripheral neuropathy, lowering of blood counts and nerve damage) are cumulative, so we will see if any of these develop.
For me, life post-transplant has been very challenging. A lot of things seem muffled because I have such low energy reserves, but I’m trending upwards and each day and week and month that passes, I gain awareness and more energy. I am rebuilding my life and especially my body and my mind. It’s the hardest thing I’ve ever had to do, but it’s all moving in the right direction and will take time.
So that’s what’s going on with me. I don’t want my sincere thanks to get lost in the update about what's going on with me. I cannot thank you all enough. Thank you from the bottom of my heart!