It’s official. We started a new chemo yesterday.
Our day started off by getting a phone call from the KU doctors asking if we could come in earlier than noon so we had more time to discuss our treatment options. So, we both left work around 10 and got there a little before 11. We had to wait for a while, but the wait wasnt’ too bad. I was actually pumped up and ready to duke it out if we had to. I felt strengthened, encouraged and maybe even a bit joyful. No doubt, thanks to your prayers.
Our favorite KU Doctor, Dr. Abyankar, came in with Ellen, the transplant coordinator. We love Ellen, she’s the sweetest lady ever, but we never like seeing her in our exam room. 🙂 Just like the doctors had told Brian the day before on the phone, they were not thrilled that we did not have a follow-up plan in place and therefore, they were really encouraging us to do a 3rd transplant. I understand their intent…their thinking is that this may be one of the last chances we’ve got to really knock down the cancer, so it may be one of our last window’s of opportunity to go into a transplant with a small amount of cancer. I understand that a transplant is really the only “curative” option out there, although the chances of it work and actually curing are about 5-15% compared to a 50% chance of it killing you. The doctor says there is about a 35% mortality rate within the first year of a transplant. I supposed 1 out of 3 is a decent ratio for us, at this point.
We did not decide to do a transplant, but we did say we’d be willing to let Ellen do an extensive search of a donor just so we know what kind of match we’re looking at if we ever changed our minds. Brian’s bone marrow make up is more complex than a lot of other people’s because he has mexican and indian mixed into his blood, and those demographics (especially indian) are very under represented in the donor bank. So, it is hard to find a great match.
We had been told at our last appointment with Dr. Ganguly that a DLI (Donor Lymphocyte Infusion) would still be an option, even though 3 is typically the most they ever do. This is where they would take more cells from his donor (Brian’s sister) and infuse them into his body, in hopes that it would rev-up his immune system and start attacking the cancer. We were really in favor of this idea as a follow up. But, in typically KU fashion, when we mentioned this to Dr. Abyankar, he said “no, we’ve already given you 3 doses and it hasn’t worked. plus your body has already built up plenty of it’s own cells, what would another DLI do?” So, I suppose that isn’t an option after all. Sure wish they’d get their stories straight.
We’ve been researching a lot and have found a type of chemo that was studied back in the late 90’s that they used to use for relapsed hogkins. It is called Interferon. When we mentioned it a few appointment back with Dr. McGuirk, he said “you dont want to mess with that, its a chemo.” But when we mentioned it to Dr. Abyankar, he wasn’t opposed to it. Supposedly, interferon (or something within it) is something we actually have within our bodies. This “drug” is actually just higher amounts of it, and therefore would possibly aggravate the immune system and cause it to start fighting and produce some graft vs. host effect. This could be a really good thing, as it means it could start attacking the cancer, too…in theory. But, as with anything…we shall see. The next doctor we see may put a stop to that idea.
A few of the doctors had met the night before we came in on Thursday and decided that GN would be okay to start, as long as they didn’t give him the “D” part of the chemo, as his echo showed that his heart was just below “normal” strength/pumping levels. Normal is between 55-65, and Brian’s was around 50. There is also a “lifetime maximum” that a person can get of the Doxil, and Brian is already close to that, as it is also apart of the ABVD chemo (i think) that he did when he first got diagnosed. So no “D”…but that is okay, I suppose. It is a VERY hard drug and can cause a lot of damage.
The “GN” drugs still have their side effects, but not as severe as the D. A few of the common side effects are fatigue, nausea/vomiting, low blood counts, poor appetite, constipation and muscle weakness. A few of the less common side effects (<30% of patients) are neuropathy, hair loss, difficulty sleeping, mouth sores, shortness of breath and low-platelets (risk of bleeding).
After we talked to the doctor and transplant coordinator, I asked if we could go get something for lunch while they prepared chemo. They said yes, so we went to Houlihan’s which is one of only 3 places to eat right near the Cancer Center (Hen House, First Watch, and Houlihan’s….looks like we may be spending a lot of time at those places..haha). We had a delicious lunch and talked about treatment options a bit more. We talked about transplants, about KU constantly trying to get us to do a transplant, but the sober reality that we really should at least consider it…as it is the only “scientific” curative treatment option. I say “scientifically” a lot, because we know that God can do anything and it doesn’t have to line up with science.
After we got back from lunch, we got right into a treatment room they were holding for us, and they got the process going. It didn’t take long for the pre-meds (anti-nausea) to finish, and then about 30 minutes for the “G” drug, and about 20 minutes for the “N” drug. Then we were out of there!
Brian handled the drugs well, he just slept the whole time. As soon as he was unhooked from the toxic-pipeline, we headed out. Of course, we had to stop and get a Frosty on the way home. 🙂
Brian has handled the drugs pretty well, so far. A bit of nausea, but besides that, he is doing okay today. We’re praying that the drugs work fast and bring some relief of the itching, as well as completely rid his body of cancer.
How can you pray?
- Pray that we will be able to discern which follow-up treatment is best
- Pray that God would continue to strengthen us and bring us joy in the midst of trial
- Pray that the side effects would be minimal
- Pray that Brian would get relief from his itching soon
- Pray that God would choose to heal Brian on this side of heaven
- Pray that we would remain in the moment and not get caught up in the “what ifs”
- And pray that through all of this, we would be drawn to the Father and to each other like never before.