Hi Chrissie.
Thanks for asking, very thoughtful of you.
I haven't been on the forum for a while as I didn't want to bother anyone with my issues, but since you ask...
Things have gotten quite bad and I am struggling to do basic stuff, for instance open doors that are heavy, climb into car, and for 7 months now I haven't been able to lift my son who's just turned 2 (mind he is a big lad). I have had a 4 week spell off work as I am shattered and sore all the time. Neck, back, ribs, shoulder blades, hips, groin, knees and ankles. If I move I seem to pull something. In the morning I get up and my thoracic spine feels glued to my ribs.
I am still in the discussions for a transplant and am getting mixed opinions. Some say it may be the best course of action, potentially rebooting my immune system, others say if I respond to TKI's from a molecular standpoint then maybe not. I'm back next week actually. I am also in the process of having HLA matches of my 2 brothers. Obviously it is not a decision I am going to take lightly but I feel I need to do something, as two year on and 4 TKI's later I am getting worse and worse. Has chopping and changing been detrimental over time, with the results coming off the back of EuroSKI withdrawal literature?
I have just found out that I have had an elevated IGA marker for months which has just come to light. That has made me question whether a treatment break was of any use at all if there is another potential factor. My consultant is supposed to be speaking to an Immunologist for some feedback, I have also been referred to a Rheumatologist for a second time.
I have been off Bosutinb now since the end of November and my PCR had elevated from 0.04% to 1.7% by the first week of January. I had my latest PCR last week and will get the result this week, obviously I expect it to be higher this time. Usually I feel better this far into a trial, but this time it feels like something else on top. Personally I have questioned the validity of the treatment break if an inflammatory marker such as the IGA has been up before I even started the trial?!? I believe CML/TKI's may trigger Rheumatological responses in a small minority. Steroids have been suggested by the transplant team, not sure if anyone else on here has had similar issues or taken steroids?
Anyway at the moment I am struggling to see the wood for the trees if I'm honest. I am desperately trying to keep active, walking, pushing on, staying positive, trying to plan ahead, but I feel like I am much older than 36 and shuffle around like I am 90. Just before diagnosis I was cycling, in the gym everyday and operational in the emergency services, now I am finding it very hard to put my socks on, what will things be like in a years time or two, if the past 2 year are anything to go by.
How are you? How are you holding out on destiny, last time I believe you were hovering around the 0.05 mark nearly a year in?
Thanks again for your interest and kind words to date, and sorry if this is long winded but I wanted to give you an accurate account.
John
PS, I have created a new thread as I didn't want to hijack Sandy's topic regarding feedback for the CML Patient Day. Also anyone who is new to CML, I believe I am quite a rare case so do not read this and think this is normal, plenty of others on here seem to lead good lifestyles and have done so for many, many years.