This was a big day for me: I met today with my hema-onc to get the results of my sixth PCR test since stopping Sprycel 100mg in mid-September 2011, which was the second anniversary of my first testing 0.000 = PCRU.
I am one of the very fortunate ones who has had the experience of being put on the TKI that best suited my case of CML: for me it was Sprycel 100mg, starting in May 2009, following seven months on-and-off Gleevec 400mg-300mg-200mg, then a four-week vacation from Gleevec to try to reset my body's response to it.
Most of you have heard my story innumerable times, but for the newbies who might like to hear it, I was diagnosed in Oct. 2008 with the highest WBC my hema-onc had/has ever seen (though others have tested much higher): WBC 459k, with normal platelets, however. I'd been sleeping most of the previous year and my spleen was HUGE, and I'd lost over 30 lbs. in the previous two months.
My response to Gleevec was slowed by the side effects I experienced that caused various trials in the lowering of the dosage and, after a consultation with a CML specialist at Stanford, a four-week vacation from medication.
At that time my blood work showed increases in my WBC, PCR, etc., so Sprycel was ordered while I restarted Gleevec 400mg for a week. After a one-day medication break, I started Sprycel 100mg and was so very fortunate to not experience any side effects on transitioning to the new TKI.
Two months later my PCR was .007; four months after starting Sprycel I tested 0.000, PCRU, and since then PCR tests have never shown ANY measure of CML at all.
Coming up to two years of testing 0.000 consistently, I again had a consultation with the CML expert at Stanford and, due to the collected test results backing up my hope, I received permission to do my one-person trial of stopping Sprycel. I mentioned it here at the time and said I'd report back when there was anything to report : )
Hooray for Sprycel! It worked for me!
I think perhaps my hema-onc is now in some denial of this success of Sprycel, since his training demands that I be kept on a TKI for the rest of my life. However, he is openminded enough to support my unswerving desire to be off medication and he has now approved that I go from being tested every month to now being tested every three months (though he has put in three more every-month orders for CBC, CMP, and PCR, should I be feeling nervous about waiting for a full three months before my next blood tests). I will see him again in June for those test results. BTW, this testing regime is in fact what the Stanford specialist set up for me and my hema-onc.
Here are a few published reports (there are others) that helped guide me in my quest. Because I did my homework and noticed that I met the required criteria — fast and deep response to my TKI, maintained for at least two years — the oncs really HAD to pay attention to me, there was no excuse they could find not to (and they tried everything)!
CESSATION OF DASATINIB OR NILOTINIB THERAPY IN CHRONIC-PHASE CHRONIC MYELOID LEUKAEMIA PATIENTS WITH SUSTAINED COMPLETE MOLECULAR RESPONSES
Some With Once-Deadly Leukemia Can Take a Break From Gleevec—Small minority of CML patients went off the drug for 2 years with no sign of recurrence
Durable complete molecular remission of chronic myeloid leukemia following dasatinib cessation, despite adverse disease features
In the above studies it was reported that everyone who relapsed and needed to restart their TKI (usually about 60% of the participants) did so within the first six months, and for them it was "take your TKI and go right back to PCRU, no problem, no mutations, nothin'."
And it was reported that of the other 40% or so of the patients, those who did NOT relapse within the first six months, it has now been several years and counting (for some less time has elapsed since they stopped their TKI), without any return of CML.
NOTE: When I went to hear Dr. Neil Shah speak at the LLS conference in SF in January 2012, I did hear him say that now ONE person, after a few years of being PCRU after ceasing their TKI, has tested less than PCRU. I told my hema-onc about this today, to reassure him that I knew about it and didn't have a false hope. He's just not buying it's really a cure, but I thanked him for his successful treatment and congratulated him with "Oh, well done!" since this is indeed rather a unique situation in the field of CML. He appreciated that : )
I know (since they told me so) that there is no way either of these doctors would have ever suggested that I stop my medication at any time, so it was only with some inner knowingness that I calmly presented my request and expected them to listen. My hema-onc did admit that doing what I'm doing, with supervision, is what will help everyone learn more about our TKIs.
I also know that if I hadn't listened to my own inner prompting, I'd be living with those debilitating side effects for the rest of my life, and it was wearing me out.
Now, finally, today, I can report back here about what the past six months sans Sprycel have been like:
• My hearing loss has not improved. Within three or four months after dx, I could no longer hear conversations in the car, etc.. I've had two yearly hearing tests documenting the state of my hearing, and my next one is mid-April. Friends got together and gave me some amazon.com hearing aids at Chrismas : ) A fun blessing: here in California we not only have headphones for the hearing impaired at the movies, but now we have special closed captioning boxes issued to us in the movie theater for personal CC! I love it, as even with hearing aids I often miss hearing the dialogue.
• I still need to nap a couple of time a day, and if there is a long day of activity with no nap(s), then I know that the next day or two need to be all about rest.
• On the other hand, the unique, overwhelming FATIGUE of being on Sprycel took about a month to recede; what I have now is different: I can have a thought and then spontaneously act on it; before, it would take a couple of days of planning to get something done. But, I get tired after my activity.
• Aches and pains: oh, yes, I didn't get any younger while having CML. And now I can't blame CML or Sprycel for any of the trials of life! I do suspect, however, that perhaps there are some lingering or permanent effects from CML and Gleevec & Sprycel. Nevermind. Can't be helped.
• Emotionally, there is now the "oooohh, I made it through six months without any measure of BCR-ABL being detected! there is HOPE!" And for the past month I've gingerly begun allowing in thoughts of the future, seeing my next decades without the shadow of CML (for however long it remains either hidden or GONE!). This is big!
(Please don't hate me; there must be others out there who are going through this, being off your TKIs, as I've seen you perhaps here, and definitely on other boards, and I admire you all: you are the ones I need to talk with most, as I don't want to upset anyone who has responded differently to their TKIs. I do feel, however, that it is important to report that this is my experience, and that it might be more and more available to others, especially those recently diagnosed and on the newer TKIs, and those who respond swiftly and deeply to Gleevec [Trey! Susan!])
Finally, having this board to go to, anytime, to be with others who UNDERSTAND what it's like to have CML, has been probably the most healing thing of all. I can't thank you enough, everyone who writes and everyone who silently witnesses our shared experiences. THANK YOU!
ChrisC [I'm not going anywhere]