To say that I am not NERVOUS, EXCITED, SCARED, AMAZED, would be an understatement...
I can hardly believe that I am actually doing this...
This? Right, well let me explain....The "this" I am talking about is kind of like jumping out of airplane and hoping like heck you've set your parachute right. Or, maybe it is like setting off on an adventure and hoping the GPS doesn't malfunction. But, it might also be like taking a walk out in space - and hoping the life line tether holds! The point is that in all of these things, somebody had to be the first person to actually do them. While, I am not the first to do what the subject of this blog is all about, we can certainly say, there aren't that many of us...
My curiosity was first peeked on the subject of what this blog is about, by some few scant reports, in peer reviewed journals I might add, that there were some occurrences of some patients suffering from CML, who were able to stop treatment and not relapse. Some were able to hold their drug free remissions for years, even decades, others for not so long.
I can say I am a fairly informed CML patient. You have to also consider that I have had conversations with many top notch CML key opinion leaders. I am not bringing this up to say that in anyway anyone of them actually endorses this. But suffice it to say, that true, while I am not in the confines of a clinical trial, this is how I chose to go forward with my own CML journey.
This blog is not about trying to convince anyone else about what you should or should not do. There is no sales pitch. This is a just a blog of human interest. I have absolutely no way of predicting how this will all shake out in the end. Along the way, I hope you will see that we can advocate for ourselves, but we have to educate ourselves. We can weigh the risks and the benefits and, above all, clearly communicate with our primary health care advisors.
I hope this works out for me. I hope I get to join the ranks of some few individuals (emphasis on the few) who have been able to enjoy (dare I use the word enjoy?) some years of drug free remission.
Note that I am not using the word cure. It seems pretty clear to me that the original leukemic stem cell clone is probably still hanging around. It could very well "re-start" the CML. But I am hoping to buy some time on reduced drugs, and possibly even some drug free time of improved quality of life.
So come along for the ride, leave a comment if you are so inclined...
For Background about me, click on the "profile" link on the right. For links to information and peer reviewed abstracts on the subject matter of this blog, please click on the link on the listed pages associated with this blog on the right.
Two days ago I stopped taking the TKI I was on (Sprycel) BUT, I will continue to take weekly injections of 90 ug of Pegasys. The waiting and watching is on. I will go back for monthly PCR tests- opting to be very closely monitored.
It is important to say that I have had this discussion for quite some time with my health care advisor, who notes we are doing this, because, well quite frankly, I would do it anyway...Maybe he is right....But nonetheless, there is dialogue, there is follow up.
What do I expect to happen? I really hope I can hold this response, CMR, and eventually lower the Pegasys. And then? Who knows?
So for now, it has only been two day's of no TKI. Already the achy feeling, almost like a feeling of arthritis, has pretty much cleared up.
I like to believe that I am in recovery from CML, maybe we all are.
May we all be well and healthy!