Just a quick update from my case ... input and feedback is always helpful. After flattening out on the edge of MMR at 18 months, I started a slow, but steady, downward trend that is continuing. It's just taking a long time to beat my CML down. I wish I knew why, but hey - at least it's going down, right?
Date Result (International Standard)
Questions for others:
- I'm becoming increasingly curious about combo-therapy options, because I think that marrying up Gleevec with something additional could be the secret sauce for cases like mine to eventually reach a treatment-free remission (I don't think I'm going to get there on Gleevec alone). Is anyone currently in a combo-therapy trial or treatment plan? If you'd be willing to share a little bit of info about it and how it's going, I would really appreciate it. I'm still considering @Scuba's circumin 8g/daily plan - I'm just a little worried that my whole body will start turning a burnt shade of yellow!
- Have any of you followed a similar journey to mine and eventually reached PCRU after several years of a slow, gradual drop? If so, how long did it take?
The Latest on my Routine:
- At the advice of others on this board, I started a probiotic with breakfast to try and keep the gut feeling good. I now take Gleevec later in the morning with a protein snack bar and some water, and it seems to settle in pretty well. I still have some GI problems in the early morning, but it very well could be due to the 2 delicious cups of coffee that I enjoy around 5:30am daily. I don't feel any GI issues when I take Gleevec.
- I started taking a 500mg Vitamin C supplement with Gleevec several months ago (one of Trey's many excellent recommendations) .... and PCR is dropping ....... hmmmmmm?
- I tried dissolving the 400mg dose in an 8oz glass of water one time, just to see how my stomach would feel -- it was pretty gross and a big hassle. I wouldn't recommend it. For me, I don't think it really made a difference.
- Endurance exercise continues to be my Gleevec fatigue-buster. I've been blessed with good health and big lungs, so I've taken up road cycling and put between 60 - 120 miles weekly into riding. However, I do wonder if my fast metabolism and light weight might be negatively impacting the plasma concentration of Gleevec in my bloodstream. It's total speculation, and I don't think there's anything I can do about it anyway. What can I say -- I love biking and running, and it just feels great to be healthy and in shape! The folks I cycle with have no idea that I'm dealing with CML - I think they would be pretty surprised.
- Over the first 5 months of Gleevec 400mg treatment, I lost an eye-popping 30 pounds from my already-thin frame. It was alarming! Not sure if it was due to the TKI/GI interactions, an aggressive exercise routine, or anxiety (or perhaps a factor of all three). Although I take in a lot of calories daily, I've only gained back a few pounds over the past two years. I do burn a lot of calories on bike rides, but I had ankle surgery a year ago and while I was rehabbing I wasn't getting any real exercise at all -- and I still didn't gain weight. I don't have an answer for it, so I'm just dealing with it and continuing to replace clothes that don't fit anymore.
- It's possible to have detectable levels of CML, but still be healthy and active. The body has the ability to adapt to its "new normal". For example, my CBC/CMP numbers are all in the normal range except for RBC and Hemoglobin levels, which continue to hover below the normal range. Why is this I wonder? Fortunately, my body has adapted to this and it's having zero impact on my breathing and endurance ability.
- I still get ringing in the ears (I hear it right now actually -- ringgggggg) that surfaced into the second year of treatment. Others have mentioned something similar, so I wonder if it's an annoying side effect, or just hearing loss from years of drumming. My doc is going to give me a blank stare when I ask him about it. "Just keep taking your Gleevec" he will say ........