We had a bit of a mixup, or rather the BMT clinic had a mixup on our appointments, so we ended up going in for the checkup on Friday, not Thursday. Going in, I have had no significant fevers, vomiting, or other complications or problems. Patricia is very good at making sure I get out and do some exercise every day which is good for me. Wednesday was the first day I went for an entire day without a major nap since I went into the hospital. I did this again yesterday but it was mostly because I could not lay down until it was bed time anyway! I still need a nap most days, but that is down from 2 a day to 1 a day. Energy level is slowly coming up -- my sense of humor is coming back.....at least I think it is.
On April 2nd, my Hematocrit (proportion of my blood that consists of red blood cells) was 34% of my cells; yesterday it was 37%. The bottom end of normal is 41%. So, still anemic, but moving forward and getting close to normal. Keep in mind that I have been anemic probably for over a year, so this is a good sign. 4/2 my platelets were at 105 (these help me to stop bleeding), yesterday they were at 155 which falls within the low end of normal range. On 4/2 my neutrophil count had dropped down to 1.7 after the neupogen wore off; yesterday it was back up to 4.3!! These are cells that help to develop into the infection fighting parts of the immune system, so this is great. This is in the middle of the normal range. Hopefully those will stabilize.
All of that was fantastic news. My immune system continues to grow and improve, getting me to within the normal range; I haven't seen scores the normal range for some of these counts for probably 6 months or so. We don't have a current read on the cancer indicators, but we'll get that in a couple of months, maybe earlier. I also have an appointment now scheduled with my regular oncologist for the end of April. At that time, I will "officially" become his patient again instead of the BMT's patient.
Doctor Peterson indicated that in their opinion, I had done fantastically well with the transplant, and my results were looking really good. The next decision we are facing (there seems to always be another decision looming) is whether to do consolidation treatment and/or maintenance treatment. I have been reading about this, but Dr. Peterson also shared his own ideas about this. The key thing that is hanging the field up is this: studies have shown that those who DO go on consolidation and/or maintenance treatment (taking lower doses of chemotherapy after transplant) have a longer period in remission. However, the same studies also do not show what they call an Overall Survival benefit, meaning even if they were longer in remission, they did not live longer as a group than did those who did not go on maintenance. He explained that this is partly because they think that going on remission enables the cancer to eventually become resistant to the chemotherapy so that when you relapse, it is more difficult to treat. So maintenance can give you longer remission, but you are still going through chemo (lower doses, yes), the drugs can actually inhibit your immune system's production of some of the key infection and disease fighting white blood cells, and it more than doubles your risk for developing "secondary cancers", other types of cancers or illnesses. Lovely, eh?
He thinks that we are in the middle of significant progress and that the next 5-10 years will show even more remarkable results, possibly even a cure. The goal right now is to make Myeloma a chronic disease that is treatable and not fatal. So if the transplant can give me 2 years (median) remission, we are that much closer to progress being made and new drugs being available. However, I suspect, I hope, I will get more, maybe much more, than 2 years since the group that median (or average) is based on includes those with highly aggressive genetics in their myeloma. Dr. Peterson also described a small group of patients he had personally treated who have been in remission after transplant for 20+ years -- some show signs of the cancer, but it appears to be "paralyzed" - it is not growing or progressing, but has just been sitting there for years. Of course, the chances are I will not be in that group, but we can hope! Here's a story to help you understand something of statistics:
A biologist, a chemist, and a statistician went hunting. They spotted a large buck in the woods. The Biologist took aim and fired but missed by 6 inches to the left; trying to compensate, the chemist fired and missed the buck by 6 inches to the right. The statistician pumped his arms up and down and shouted "We got him!".
Last news: here is a photo that is great to see. The marks on my head are from wearing my hat a lot yesterday, but look at my chest!
No Trifusion Catheter! I am free at last! It was there only about 5 weeks, but given the trauma of the first days it was put in (go back and read early blog posts), it is such a relief to have it out. This was also a potentially high infection path, so that gives me some additional protection. I am learning to try and move more freely again and will enjoy having some scars to show people and tell them the story of how Patricia attacked me with an ice pick.
So that is the latest. Thank you all for your love and support.