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]
Chris. . .thanks for posting. Wish I were were you are. I am, apparently a turtle, still plodding along. Just had my PCR done today and will look forward to the results. Hopefully a downward trend since the last few have been disappointingly flat.
I assume that your hem/onc is documenting all of this and it is going into the big knoweldge-base in the sky. . .or at the cancer centers, or wherever it goes. I think that we all hope for the chance to have a total cure and be off of the meds.
Best of luck as you continue your adventure. Keep us informed!
Thank you ever so much for your posting ! Don't hate you, not there yet, but looking forward to it !!! Your one-man trial is exactly what we need to hear about ! We need more statistics on these TKI cessation efforts and if it takes one man (woman) at a time, then so be it !! I look forward to hearing more as I am certain do others on this board. Thank you again for sharing !!! I am hoping that your energy picks up as well...what a great thing that would be.....and I would like to toast your HOPE without the shadow of CML !! (Am thinking of Tedsey's chocolate martinis right about now...)
Thanks Marnie and Janne, I am indeed celebrating!
After my appointment this afternoon, I bought myself two bunches of daffodils at Trader Joe's, and some asparagus that is steaming now, and I will treat myself to some wine tonight, too. Springtime is in my eyes today, for sure!
I don't know if my hema-onc is documenting anything, but I expect that he's let the Stanford expert know how things are going (they are friends). As long as I'm a patient, they will be faced with my CML history, right?
I am indeed hoping for and expecting that the subject of successful TKI cessation will be a growing category of chat on our board: who's with me?!
Time to eat, thanks for your support!
Chris, you are so encouraging! I am so excited for you and hope one day more and more cmlers will be able to stop their treatment with careful watch. I too responded fairly quickly but fear my high platelets at diagnosis might make me more of a risk for cessation even though my white blood cell count was normal (BMB showed 4 out of 20 cells of those peksy white cells positive though). Please continue to keep us all updated on your progress. Kudos to you Chris!!! Skittles
Thanks, Skittles! Having battled your platelets well in the beginning, now you have been PCRU for a couple of years: who is to say that where we started makes a difference in where we end up?
In January I asked Dr. Shah if anyone was looking into the various outcomes of CML patients, with all our various starting points, as it seems to me that may be relevant somehow (I suggested that was what graduate students were for LOL). He snickered and said that for now the money is to support larger projects, and maybe in a few years time it would happen. Seems like a database of some sort could be started and we (okay, the researchers) could put in each new patient's info (patients' anonymity protected, of course) and at a certain threshold of patients and recorded progress, some patterns might emerge — or not, which would also be very informative. Anyone?
Carry on, Skittles, and thanks again for your encouragement.
Congratulations on the six months.
I get my next blood test in a month and if I can get another PCRU I'm going to start counting down the two years from my first PCRU. I'll probably follow Joel's steps in reducing the Gleevec to 200mg for six months and if my PCRU continues will have a go at stopping altogether. Though when I read Lucky's info the other day, it seemed to indicate that men did better at TKI cessation then women. But if I don't try I won't know. Though you never know, perhaps they will have a cure by then.
You are forging the way for the future. God bless you, you are dedicated, determined, not to mention possessing a boat load of courage to travel your path. Perhaps one day I will have your confidence, but for now my goal is to reduce to 50 mg in time and perhaps 20 mg as an ultimate goal. Thank you for sharing it isn't all peaches and cream, even off the TKI, everything does not become rosy just because the med is no longer part of daily life. Congrats on the success and a toast to your next 6 months, and then 6 more, and more, and more!
Thanks for your comments, Judy, Gerry, Pam, and Skittles. We are all in this together somehow, and we are all learning our way as we go along.
Getting to PCRU, in the beginning, wasn’t the goal: surviving every drug thrown at CML patients just to keep them alive was more like it. We have no idea what the toll of that style of treatment was unless we were the ones experiencing it. (Susan! Lottie! Skip! Zavie! Marty! etc. etc. etc.)
Next came Gleevec and it was the magic bullet: there was finally a road to walk, with clear markers along the way to show that CML was being dealt with successfully. And you didn’t need to get beyond the first couple of markers to know that you were going to be “okay.”
And that was only in the past decade or so!
More recently treatment options have moved brilliantly forward, without a doubt.
Plus, as patients, we had the internet to let us be a community and to share our thoughts and support one another. This was a most precious commodity indeed. Emotionally and otherwise, we connected.
Now it begins to look like there is a fast lane or two on the road. We don’t know yet if these lanes have an upcoming mandatory lane-change or not, or if we’ll find an off ramp available (maybe so!).
For me, when I saw that I could switch into a fast lane and even eventually try being off the road, it wasn’t really much of a choice. There was evidence to support stopping Sprycel completely, or to stay on it fully, and nothing to scientifically support a lower TKI dosage, and my doctors completely blocked me on that lane.
Soon, we hope, researchers like Dr. Cortes will publish their results of using lower TKI dosages in certain conditions and situations, and that research will be your support in your plan to taper off. Trey didn’t use that approach, as I understand: that’s the courageous stand, not mine.
And there is no requirement to stop taking a TKI, ever, so there is no pressure to change anything. Personal situations vary, and response to TKIs vary, week-to-week and month-to-month, etc. Side effects dictate quality of life, and mine was almost non-existant: I slept all the time, my dental health was deteriorating, brain fog was a constant companion, etc. Given the research available online, I had no choice, and no hesitation, in choosing my own road, and I am so grateful the doctors agreed. There is no money for me to have joined a proper study: this was my only option (other than to embrace suffering) and I took it. And so far, so good, yay!
Great work, researchers and patients who have given us these TKIs and research results!! Can’t thank you enough! Kudos indeed
Congratulations, Chris! You are my inspiration to follow a similar plan. I am on Sprycel after Gleevec not working for me and had great response to it once I could stay on it. I am on low dose sprycel (20mg.) and that low dose was able to put me into MMR after 7 months. I do wonder if it can put me into CMR? If it does, I'll start the countdown clock to drug cessation. Everyone on this board knows I am EAGER to stop taking this drug.
(by the way, Dr. Cortes did not discourage me from wanting to stop Sprycel after two years of PCRu. He would gladly prescribe the monitoring protocol as you have done. He does feel that for those patients who have deep response it is worth at least finding out if they can have a durable remission with no TKI).
Thanks, Michael! I too am wishing you complete success with your plans!
Please encourage Dr. Cortes to publish regularly about his patients that he is monitoring using less than the full dosages of the TKIs. It will be of immense help for others when they broach trying to maintain their 2+-year-duration of being PCRU to their onc and wanting to be on a lower dosage than before. Without any published research to back them up, how can we expect responsible oncs to support our wishes for higher quality of life with less TKI side effects? And please thank Dr. Cortes from all of us for his visionary approach to treatment!
Thank you as well for all of your updates on your progress: most encouraging!
What I remember him saying was that he had heard that one of the ~40% of the patients who had stayed PCRU past six months without their TKI, and had then remained PCRU for a couple of years afterwards, had been reported as having some BCR-ABL become measureable in their PCR test.
I got the impression (I don’t have a transcript of the talk or the Q&A afterwards, when he mentioned this) that the patient then restarted their TKI and then regained PCRU, but it was just mentioned as an aside after Dr. Shah stated that all of the ~40% continued as PCRU after the first six months, without relapsing.
He said something like “Actually, I heard that there was one patient who didn’t stay PCRU.” That is what I remember, but my hearing is not excellent even with my hearing aids, and memory may not be so accurate either.
I will be watching for more recent publications of the studies on discontinuation of TKIs, as there will be updated details in them as we go along.
Thank you Jack, Tedsey, and Pin: may it soon be that we are finding more opportunities to congratulate each other all over the CML boards, and that we can be rewarding doctors and developers and researchers for finding us a definitive cure (better yet, a working preventative!).
Chris thanks for the explanation. It seems as long as we can maintain MMR we will do well. I know I speak for everyone when I tell you we are all watching your journey with baited breath praying this is going to be the wave of the future for some of us. You are so brave to take this path and we all rooting for continued success for you!! Have a great day and thanks again for sharing. Skittles
Hey Chris - just curious ... Since you have stopped taking a TKI for months now, did you notice any change in your skin, hair or anything else that reflects stopping the drug? I don't have any side affects, but did notice a bit more Gray in the last year. I want to blame the Sprycel ... so when I stop taking it, my hair will go back to normal color, my muscles will rejuvenate and I'll have the vigor of a 20 year old ... o.k.... maybe not, but still curious if you have noticed a difference. Thanks
Hey M –
Yes, there are little changes, such as a little more hair returning to various parts of the body, maybe a little change in skin but dry skin wasn't a problem for me — when I was younger I had oily skin: I was always told that would be a benefit when I got older; true: instead of dry skin I've now got normal skin. I’ll likely continue to wear sun block and a hat, why not?
Since dx I have achieved a nice silver/brown head of hair (I prefer silver to "gray"!) and sometimes I ask myself "Is that looking a little more brown now?" (maybe, or may be the lighting . . . ). My biggest druther is that my real energy returns: having to rest so much, for a year or so before dx and then 2.5 years since dx, my muscles are semi-lost (use 'em or lose 'em), so jumping back to old normal life, pre-fatigue, is a slow hop rather than a jump. Age happens, and there are changes anyway. I'd say I'm about 21 years old inside, and 60 years old in reality — with a few years downtime to reverse! I've got hope that I'll still be surprised by good changes happening overall, and with Spring here there likely will be more outdoor activity!
As for the aches and pains, I am looking into learning more about foods that cause inflammation throughout the body. Dairy seems to be a trigger for me, so cheese isn’t being purchased anymore. One change at a time, to see what helps.
The big change from stopping Sprycel, for me, has been the gradual passing of the debilitating fatigue (5 naps a day, lots of pre-planning to get anything done; it would take me two hours to change the sheets on the bed, with long rests after each corner was tucked in, etc.); now I can just not overdo things and I'm still awake, even arriving home from errands with the energy to enjoy life. Making the bed in normal time makes me smile every time!
There were no sudden changes, it’s all gradual, for me anyway. But cumulatively the trend is in the right direction and I am hopeful that they positive changes continue, even accelerate!
congratulations Chris!! This gives me so much hope. i received my CML diagnosis when i went in to get a physical because my husband and i wanted to start trying to get pregnant. so that obviously had to be put on hold. i received full remission quickly with sprycel, now the plan is to go off of it temporarily (maybe longer?) while i attempt to grow a healthy fetus we are waiting for the OK from my onc. before we start trying but this gives me hope that i will be able to stay off of it at least long enough to have a healthy normal couple of trimesters. thanks for the info! keep us updated!
What great reading, truly inspiring for me, i hope you are still doing well off Sprycel Chris.
This gives me hope, as i too had a high wbc (270k), normal platelets and a very large spleen when i was dx`d. When reading guidelines etc i usually read that big spleen=accelerated phase CML, and im so afraid of being in AP, even though my onc says i am not. (He even says it was caught pretty early)
I thought that big spleen meant you would always be a High Risk (Sokal, Hasford etc) patient and never being able to go off a tki, like ever. Getting closer to my 3month checkup i get nervous and sometimes think ill probably be dead within a year (knock on wood). Then i get back to reality and think to myself, the 400mg Gleevec has been working great so far, and there is no reason for it not to continue working, and i relax a bit more. Luckily i also have this forum to come to and ease my mind, reading other peoples stories, especially reading how people with big spleens actually do very well.
I too was always tired prior to dx, but i blamed my 2 small, overly active children, and my lack of sleep + working shifts on top of that. All i noticed was a lump in my stomach that could be felt when laying on my left side so i went to see the doctor. (This was of course my spleen)
Sorry for reading posting so late after on your thread, but i was dx`d in april and didnt find this forum until the start of may and i didnt get the chance to read it until now.
Nice feedback, thanks. Glad it helps to read about it!
Best wishes to you for a good checkup (next week?) and excellent progress. It takes time to process the CML diagnosis, and for awhile fearful thoughts seem like they win. However, it sounds like you already are getting to choose whether or not such thoughts are worth entertaining, as you have gained needed knowledge and perspective. Hooray!
Your hands are abundantly full with your kids, who will have you around for a long, long time: do not doubt it!
It is wonderful that you have both found this site, and that you are reading and learning: an educated patient likely gets the answers they need from their doctors (or the prompt to find a new doctor when needed, and the information on where best to look for suitable ones).
Glad you are posting your progress, and we look forward to hearing your results, questions, jokes, adventures, etc. Imagine this: in the near future, you will be posting assurances for newly diagnosed folks, until the advent of some wonderful CML-prevention technique is developed!
Checkup + blood draw this Thursday actually
Hope i get the results quick.
Thank you for your encouraging words. Watching my kids grow up is my number one goal.
Lets hope they soon can use some kind of combination therapy to wake up those hard to reach dormant leukemic stem cells and let the TKI kick their butts. Any other form of cure would of course also be welcome, who knows, maybe CX-5461 will turn out to be something great