New Interventions Ahead

Today was a Houston Methodist day for us. It’s been several weeks since we did much related to Roy’s health; unfortunately fighting through a variety of major projects at work on top of the previous months of medical adventures found me fighting off a respiratory infection. This means I am still behind in my work tasks, but Roy’s medical adventure resumed nonetheless.

In order to proceed toward possible transplant, Roy has to work with an oncologist, a pulmonologist, and do some cardiac tests at Methodist. The first two intake appointments happened today. We got to the Outpatient Center (OPC) in time for the first appointment with oncology. This is a new floor for us – the 24th – and a new set of people as part of the Neal Cancer Center. Roy has two doctors there (so far); Dr. Mehta did the initial portion of the appointment and then brought in Dr. Abdelrahim who is the Chief of GI Medical Oncology and assigned to Roy’s case and they both did the next portion.

The information was not entirely new to us, but Dr. Mehta made it clear that Roy’s cancer is not regressing but is instead progressing – the main tumor is larger than when we started this and while it had a few small friends nearby then, there are now more “enhanced nodules” on multiple parts of Roy’s liver. What this means is that Roy is farther from being able to seek a transplant than when this began. He’s in the care of Medical Oncology to arrest the HCC’s development and get it back down to the level where a transplant would be viable. The primary thing is that the cancer must stay in the liver; if it gets out in any way, then Roy would not be listed.

Dr. Mehta explained that there is some possibility that the second MRI picked up “noise” from the inflammation of the Y-90 treatment, but it is also possible that the cancer picked up steam. The reason that this is not clear is that the second MRI happened as part of the transplant evaluation in early April and the Y-90 treatment happened at the end of March; usually an MRI would not be done until 4-6 weeks after the treatment. Roy’s was done only 10 days after. There was a possibility that Dr. Abdelrahim would choose to do another MRI to be sure, but he decided instead that if the HCC has gotten more aggressive, he did not want to waste time waiting to see if the Y-90 did the task. Essentially, even if the Y-90 radiation is working away killing the main tumor, there is more cancer on Roy’s liver than before, so additional interventions are necessary.

Roy has been offered, and we indicated to both doctors that he wants to pursue it, a spot in a clinical study to use a specific immunotherapy. This immunotherapy is very targeted. If you think of doing chemotherapy as a broad-application weed killer wiping out any and every plant in its path, this immunotherapy is more akin to a focused application that only brings destruction to a specific plant (at least in theory). The drugs that would be used make the immune system go harder and faster than normal; they specifically seek to starve the cancer tumors of blood supply. No blood, no fuel for growth. There are, of course, some possible side effects, and a ramped up immune system might decide to do some funky things, but most patients feel only incredible fatigue. Roy is rarely in the norm so we’ll see.

We hit a slight snag – the research coordinator did not get to the exam room to see us in time before Roy’s second appointment – so Roy has not yet signed the paperwork and nothing can be set in motion until he does. No paperwork, no immunotherapy. We went back to Oncology after the second consult but failed to connect with the study coordinator again (Research is a separate department so there are any number of reasons for the missed connections today). Instead Roy spoke by phone, as we left Houston, with Dr. Abdelrahim’s office explaining that he wants to go forward and does not want to be delayed. We await the call back from Dr. Abdelrahim , the research coordinator or Dr. Mehta – presumably tomorrow.

If we can get the paperwork done, Roy will get a port installed within the next few weeks (back at Interventional Radiology at Methodist) and be part of the clinical study. At which point, he will have an immunotherapy IV-transfusion session, with associated blood, urine, and blood pressure tests, every three weeks while continuing to take all his normal liver medications. He will be watched very closely as part of the study. If another Y-90 looks needed, that is still a possibility, but the immunotherapy can only help. He has an appointment to see someone in Medical Oncology again in three weeks. Presumably we will go back every three weeks, with labs before/during/after, for some considerable time to “control the cancer” and get it back down to transplantable levels.

Now, the other consultation with Interventional Pulmonology was in the afternoon – we grabbed some iced tea before visiting the most familiar floor, 22, where Livers and Lungs get all the attention. Dr. Dammad reviewed Roy’s history and confirmed Roy’s lungs are smaller than they were because of the damage from his liver disease over time; he has reduced lung capacity. To determine if Roy could be cleared for transplant listing, Dr. Dammad ordered a PET Scan to see if Roy’s lungs are okay and have “no activity” (which I understand as no cancer). If it comes back that the lungs are okay, Dr. Dammad will clear Roy for listing. He asked that Roy get the PET Scan done within the next two weeks. With great optimism, the medical assistant Joy gave us the test orders to do the scheduling while setting Roy’s appointment a week out. Unfortunately, Imaging could not get Roy into the schedule that quickly so he will have his PET Scan on May 26 and while Roy attempted to see someone in Oncology, I went back to 22 to change the follow-up for after that date – it’s complicated because these appointments must be on a Monday or Tuesday because those are the days Dr. Dammad is in the medical center OPC and not in Baytown. The follow-up is now June 2 on the same day as a return to oncology.

The cardiac tests are not yet scheduled but as those are transplant related, and not cancer related, they are of a lower priority.

Today was exhausting on many levels. This was Roy’s first oncology-specific appointment so he has now been initiated into the intake assessment quiz and we encountered a new set of specialists and patients. It was difficult to hear that he is further from the goal of transplant than we hoped. It was encouraging to hear that there are new therapies to use and that his doctor is running the study. We have a lot more to learn about these specific drugs, the way this study will work, and what we need to do to help his body succeed. I asked the doctors to tell me if we are not asking the correct questions and to give us our instructions. I am concerned that I may not be able to manage how this new intervention impacts him and his care while continuing to work, but we knew that might be the case, and I will just have to make a careful analysis to see what is possible and what is best for us. Roy is both hopeful and a little afraid, as anyone might be, but he also told Drs. Mehti and Abdelrahim that he would do what he has to do. The previous Y-90 treatment primarily has manifested in greater fatigue for Roy; we do not yet know how his body will react to this new intervention. He’s already been through a lot since 2004, but he’s prepared to do more. Roy’s centering on “Set The Tone” and I am still hoping for Enough.