|My Sloan-Kettering peeps: Dr. Sauter's nurse, Heather,|
Dr. Moskowitz, me, and Dr. Sauter - the dream team.
I got the sign off by the medical, oncology and infectious disease teams that were overseeing my inpatient care and was sent home with instructions to call if chills and fevers again broke in. Despite trying to get out of my previously scheduled appointment, my doctors at Sloan really wanted to see me in New York City on Friday. I was desperately tired on Thursday after finally getting home and couldn’t even fathom a trip to the city, but they assured me that they could see me at whatever time I could get there. They are ultimately the ones who I’ll be working with to decide my next steps – and the ones who watch me so closely and frequently, so I knew that in the end it’d be worth the trek for them to inspect me and weigh in on what might be happening.
My parents took the day off of work and my dad drove us into the city so that I could catch up on all the lost sleep coming off of my hospital stay. I didn’t really sleep, though. I was more cranky and delusional, kind of like when I used to ride in the back seat as a toddler I imagine. We sat in a lot of traffic, which only made me angrier. But we got there, as we always do. I was too impatient to wait to park the car so jumped out on York Ave and made my way into the hospital and up to the physician suites grumbling.
The driving force behind me going down there was that it was set up as a dream appointment. My lymphoma doc, Alison Moskowitz, was on service in the main hospital and my transplant doc, Craig Sauter, had clinic there so she wanted to be paged when I arrived and they’d see me together – a collision of my medical worlds! For two years I’ve wanted to get them both in the same room to talk about me, with me, and it finally was going to happen. Sure, my voice was so weak and strained I could barely talk, but this was going to happen.
When they both walked in the room together I got all red-faced and smiley and we were all laughing as I kept remarking how surreal it was to have my whole team together. They work in offices next to each other and have taken a team approach with me all the along, but I’ve never seen them interact and they’ve never seen the other doctor interact with me. It was kind of like they were competing with who I’m closest with because we are all kind of besties, not too far off in age and completely relatable to each other. The thought of us all hanging out together effectively melted away my anger and I was back in survivor mode armed with my list of questions about my status as a lymphoma patient, transplant patient, and human being. I felt like focus was lost over this past month and I wanted to get back on track. This was the perfect opportunity to do so: a meeting of the minds, a regular tête-à-tête-à-tête.
My mom took notes while the three of us talked about the potential that still remains with my donor transplant immunotherapy process and the myriad drug options still out there to try against the lymphoma. We talked about some of my hypotheses and concerns, as well as theirs. We were three amigos putting our brains together to hash this all out. I asked the tough questions about my future in all of this and was told that there is still much potential for cure. I guess I’m not going anywhere anytime soon. They told me that I’m the kind of patient that they love because I’m out there and doing things and making them look good despite all that I’ve gone through. They want to keep it that way and so do I. I’ve reiterated my need for quality of life many times as being active and engaged in my life is very important for me. If a treatment takes that away from me then it may not be worth it to me in the long run at this point.
They hear me, always, and take so much time with me. Dr. Moskowitz wasn’t even seeing patients but made this special visit for me, and Sauter opened up his clinic for her to work in, his “hood” as he referred to it. I truly have the best medical care out there: not just the science and the medicine, but how I am treated and respected as a patient and a person. It makes a tremendous amount of difference to know that my doctors at Hartford Hospital and at Sloan-Kettering care for me as much as I care for myself, that they get me, my goals, my outlook and my level of intelligence and toughness.
As a result of this power meeting it was decided to pull me off the CEPP chemotherapy. I didn’t even have to use all of my arguments against it, Dr. Moskowitz was already planning to pull that plan as she knew that I just didn’t tolerate those drugs well.
I will have a PET Scan done this Thursday and will see her to look over the results on Friday. I have not had a scan since the end of March, so it will be interesting to see what it shows. With the fevers, night sweats, and elevated sed rate, it’s not unlikely that the lymphoma is flaring some. However, there is a chance that all of this inflammation was just my immune system/the CEPP chemo working and the scan could be completely clear. In a few days we’ll have a clearer picture – as clear as the muddy, often unreliable results of a PET Scan can be.
If my scan is looking better than the last and we don’t see any disease spread then we’ll probably do nothing and ride things out until the GVH in my mouth calms down and we can look toward getting some more of my sister’s lymphocytes through a DLI procedure. If my scan looks worse then I am scheduled to start up another regimen of SGN-35 (now FDA approved under the brand name Adcetris). This is the highly targeted drug showing very positive results against refractory Hodgkin Lymphoma that I was on in December 2010 through compassionate use before it was approved. It’s now very sexy in the HL world. Both Sauter and Moskowitz believe that though I did have growth while on the drug after 3 rounds prior to transplant, it may work differently now that I have an entire new immune system. The microenvironment in my body has changed and for all we know the nature of the lymphoma has changed as well. These flaring areas may be more sensitive to the targeted attacks the drug makes to CD-30 cells present in Hodgkin Lymphoma. It’s all about the proteins and the disease strands and the micro- and macro-environment in there.
What’s great about SGN-35 is that I experienced virtually no side effects with it. Because it is so highly targeted to the CD-30 cells, it does not negatively affect all of the other fast-growing cells in my body, keeping the rest of me as unscathed as is possible. I did have some allergic respiratory reactions at the end of my last two infusions on the first go-around, but we are going to pre-medicate for that. There is some worry about neuropathy, much of which I’ve read about with other patients’ experiences, but I’m told that if I do get it, it comes on slowly and is most often reversible.
The drug is given by infusion over about 30 minutes once every three weeks. Other than that, I don’t have to worry about devoting any time to it. I can just live my life. I’m very comfortable with this plan if it’s what the PET Scan dictates needs to happen at this point. As an added bonus, Sauter tells me that SGN-35 is now being explored as a way to reduce Graft vs. Host Disease in transplant patients so it could be the perfect combo of lymphoma-kicking and GVHD-avoiding powers that will lead me safely into a Donor Lymphocyte Infusion that will be my forever cure. Here’s to hoping … .