My opponent: Reed Sternberg cell indicating Hodgkin Lymphoma presence.
It looks like owl eyes or a pig's nose - or a big asshole, depending on how you
look at it.
October did not get off to the start that I hoped it would. It’s turning into autumn, the leaves are a golden palate and the air is getting crisper. With that, I knew would come my own change, as always happens at the crossroads a PET Scan provides, but this was not the change that I wanted.
My October started with a figurative punch in the face, and then the gut, and then a few more times in the flank. I didn't even see it coming. I had no time to put up my dukes.
My mother and I sat in the small, harshly bright exam room awaiting the scan results that Dr. Moskowitz would bring in with her.
“So you’re feeling well?” She asked, having already debriefed with her nurse that I met with previously. “That’s great … .” she trailed off.
“I feel very well except for the anxiety I have over this scan,” I replied.
“Well, the scan doesn’t look great,” she said. I know it was difficult news for her to deliver.
No, it doesn’t look great. There are new lymph nodes lighting up in my chest and abdomen, which likely indicate new disease sites. The bone involvement in my hip, pelvic and sacral areas is much hotter than my last scan indicating increased metabolic uptake. My bone lesions are the worst, as evidenced by the higher SUVs (a measurement of the absorption of the radioactive tracer I was injected with, calling out the highly metabolically active areas). The left iliac wing had an SUV of 2.7 on my July scan and is now up to 15.5. My right sacrum went from 2.3 to 7.5, and my right femur from 7.7 to 10.7 SUV.
I don’t understand. Could it be all that dancing I did at Thea’s wedding Friday? Could that be giving a false read? I asked her how they know that this is more cancer and not just inflammation from my own body fighting the cancer itself in those areas. She said that they don’t know anything for absolute certain, but the fact that there are new areas of internal swollen lymph nodes (with SUVs up to 11.4) makes it much more likely that the disease is again on the rise and has again learned to morph around the treatment that was keeping it stable. It’s a son of a bitch.
We've taken me off the SGN-35. I did not get the treatment I was due yesterday. It is obviously no longer working. There is no plan right now, we’re grasping at straws for what to do next. Part of me just wants to sit on it and see what happens. The fact that I had an allogeneic stem cell transplant excludes me from many clinical trials of new drug agents. We’re looking at MTOR and HDAC inhibitors, though I’ve already tried many of them. We may need to revisit some of the drugs I’ve already been on in those categories, though many haven’t been approved for Hodgkin’s yet, so I’d have to be receiving them off-label and risk my health insurance not covering them. I’m slated to possibly try a very new drug with Sloan-Kettering’s Phase-I trial clinic, though it has never been studied in a Hodgkin’s patient, but does go after a protein expressed in Hodgkin’s cells and therefore has potential.
My head is spinning. I am overwhelmed, sick with worry and shock. Today has been alternating crying with clinical trial research, medical phone calls and e-mails to doctors I’ve worked with in the past and contacts I haven’t yet tapped into. I’m open to traveling anywhere I need to to find the treatment that I’m still seeking to put me in remission. My confidence is waning a bit, but I do believe that the key is still out there.
I am fortunate that I am feeling no pain at this time and that I am otherwise healthy and strong if you took the lymphoma out of the equation. That is a crazy reality to me. There has got to be something that will get this disease in check. I don’t understand why I have to be the one dealt this deck. Why do I have to have the unrelenting syncytial variant type of Hodgkin’s lymphoma? Why do I have the bone lesions, which make this disease nearly impossible to wipe out?
I have my game face on and am delving into the required research, but I’m hurting pretty badly inside. I just truly thought this drug would have given me more time. I had a good run and I wanted more.
No one can ever say that I haven’t tried. I have been treated at four institutions, two of the best cancer centers in the nation, I am seen by a hematology oncologist, a lymphoma specialist, a transplant doctor, a radiation oncologist, a naturopath physician, an oncology psychiatrist. I have shoved all of these treatments into my veins, down my throat or radiated through my body:
- Six cycles of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine)
- 3 cycles of ICE chemotherapy (Ifosfamide, Carboplatin, Etoposide)
- DI-CEP (Dose-Intensive Cyclophosphamide, Etoposide, Cisplatin)
- BEAM (Carmustine, Etoposide, Cytarabine, Melphalan)
- Three cycles of GND chemotherapy (Gemzar, Navelbine, Doxil)
- Two cycles of Bendamustine on clinical trial
- Four cycles of SGN-35 acquired on compassionate use basis
- Two cycles of Phase I/II Clinical Trial of Panobinostat (LBH589) and Everolimus (RAD001) at MD Anderson Cancer Center in Houston, Texas
- Fludarabine and Melphalan, plus Methotrexate injections
- Vorinostat (SAHA)
- Revlimid (lenaldiomide)
- Five cycles of Vinblastine
- Cyclophosphamide, Etoposide, Procarbazine oral chemotherapies
- Post-transplant retry of SGN-35 aka Adcetris or Brentuximab Vedotin for 7 cycles
- 10 days of highly targeted radiation to T7 and T10 vertebrae and lower sacrum
- Mini Autologous Stem Cell Transplant
- Full Autologous Stem Cell Transplant
- Allogeneic Stem Cell Transplant
What’s left? Anyone have any educated ideas, please feel free to send them my way. If I sound snarky and angry it’s because I am right now, and I think I deserve to be for a little while here as this new information settles into my understanding.