Sorry for not updating the blog lately, it's been busy to say the least. So much has happened in the past month, so I've decided to break this entry into two sections. The two big events are my 1 month checkup on Sprycel, and my visit to OHSU (Oregon Health & Science University). We got to spend 1 1/2 hour with Dr. Druker down at OHSU, and it was both a sobering experience, but also an incredible opportunity to be educated on what CML is, and specifically what is happening in my situation. it's clear that every situation is unique, although there are always similarities in the different cases.
July 2nd Visit - OHSU, Dr. Druker
We drove down to Portland the night before. You'd think that we'd immediately look for sleep without the kids around, but we took the opportunity to go to the hotel restaurant for a late night bite. It probably had a great view of the river, but it was too dark. The next morning we had to scramble to OSHU. It was only a couple of miles away, but it sits up on a hill and is a little confusing to find. The campus is clearly older, especially compared to SCCA. Looked like something you would expect an old University to look like.
My blood pressure was way up, something we clearly could contribute to the fact that we were running late due to traffic, and being late is probably one of my worst stress factors. It was 150/90 (later you'll see where I normally range). We spent some time with his nurse before the visit, and she was incredibly knowledgeable and clearly had a lot of experience in treating CML. She immediately called out that there was nothing in my medical records that indicated that anything was missed, which isn't always the case. I have a lot of confidence in SCCA and Dr. P, so it wasn't a surprise that I've already been in great hands.
Dr. Druker came in while Cynthia had to leave the room briefly, and for some reason she walked in on us already talking about a Bone Marrow Transplant. So we made sure to back up and start from the beginning. We covered my background, did the Sokal Score (it was 1.7 which is on the higher end). Based on his assessment, I was probably in the more late Chronic phase when diagnoses, and the Leukemia could have been there for 3-5 years. It's such a slow developing illness that it's hard to tell when it happened. Ironically, there is a chance that Tyler and I developed it around the same time.
He also shared that in many cases, people don't know they have Leukemia until the either come in for some unrelated surgery, or for women when they do blood work while pregnant. I can't imagine to find out that you're both pregnant and have leukemia at the same time. What I did learn, and I want to stress here, please ask for yearly blood work (blood count numbers), they can tell so much from that and it's always better to treat an illness in the early phases. Simply donating blood won't catch it, and it's not typically part of an annual physical. So you have to ask for it.
Our conversation with Dr. Druker centered around two things. How I got to where I am, and why switching to Sprycel now is the right thing to do. It's all about risk factors, and the goal is to get my risk of relapse to a minimal. Also the goal is to get my PCR down to 1 or below, his exact words were "I have been impressed with patients reaching 1 on Sprycel". He said on Gleevec the goal is to get to 0.1 or below (on average). The sobering part of our discussion was centered around what if Sprycel doesn't work, and when to have the dreaded BMT (Bone Marrow Transplant) option. As of right now, it's not on the radar until 6 month on Sprycel, so we're keeping our fingers crossed that we see some progress by end of the year.
1 month checkup on Sprycel -
I had my 1 month checkup at SCCA, and my first chance to talk to Dr. P about my visit to OHSU. He had received the report from them as well and had looked it over. Again, no surprises, so we focused on my current blood numbers. The Chest X-ray was clear, so I'm not showing any fluid buildup. This could happen at anytime on Sprycel and is a common side effect of the meds. What was most interesting is that my Platelets had dropped over half, down to 80k. I have been over 200 for a while, so it was a big surprise. I'm still processing this, but my current thoughts is that it's a good thing since it means that Sprycel is doing something. Now what it's doing, we won't know for a few months since the marrow has 1 trillion cells, and it takes a while to show an impact in the PCR test. It did cause us to schedule another blood draw in 2 weeks, to monitor the Platelet counts. Since it's been 2 weeks since my last draw, it's hard to say if it's already bottomed out and starting to increase, or continuing downwards.
They did the PCR on the blood, and those results should take about a week. We know now to not expect much for the first couple of months on Sprycel, first real indicator should come sometime by 3 to 6 months. So no movement isn't necessarily bad for the first few PCR's.
Otherwise, I'm feeling good although a little tired on Sprycel. It should get better. The headaches I experienced early on, are gone so the body seems to adjust to the medicine nicely.
oh, and my blood pressure was 112/60, perfect as Joanne the nurse likes to say :)