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Still no MMR at 24 months Nilotinib

Hi guys,

Just had my 24 month PCR result and I am stuck at 0.16% (or 0.116% it was a phone call so not sure now) was at 0.118% in October last year. I am on 600mg Nilotinib but will increase to 800mg if my mutation screening comes back negative or I’ll switch drugs if positive once they have that result. Difficult to know what to think anymore 6 months seems a long time to be stuck and surely it would have got me into MMR by now. I see a lot of you reached it at 24 months with similar high sokal scores. I realise not hitting MMR at 24 months on imatinib is seen a lot but surely not a 2nd gen like Nilotinib?

Its very worrying but my consultant still doesn’t seem concerned and said I am stable and not to worry.

How long is long or slow to reach MMR I need some kind of hope as it’s so draining and upsetting to live in such limbo of continued uncertainty. And never having any kind of closure is soul destroying to say the least.

Thanks all.


Hello Alex

Your pcr result is a bit disappointing,but your pcr level didn't increase much that is consoling. As of now I'm taking 800 mg nilotinib.either you should increase to 800 mg nilotinib or after having mutation test you should change to other tki.before changing to other tki,just give a try with 800 mg for at least two months.i hope our veteran members will provide you much insight into the matter.

I replied but i don't know why my reply has been deleted.

Thank you so much this is what my consultant said we will try 800 if I have no mutation and failing that switch to another.

Did you notice harsher side effects increasing to 800?

Warm wishes


I straight away started 800 mg after becoming resistant to imatinib.there is no side effects at all.i had bone pain when i took 400 mg imatinib.after changing to nilotinib my bone pain completely gone that too with 800 mg notable side effects at present.

I see thank you for letting me know. Let’s hope something will work. Hard not to loose hope at times. So close but so far still.

I'm sure you have read other similar posts regarding slow responses and probably even commented on them yourself.  My numbers are similar to yours (last time 0.16) and am also taking 600mg Nilotinib.  Of course I am disappointed but I honestly try not to think about it too much and am just grateful to be in CCyR to some degree for over two years now.  I will have my three year check up in two months so hopefully I will have MMR news as a gift.  

That being said I think the NCCN guidelines changed in 2020 to show that anything below 1.0 after 12-15 months is "Target Met".  I think that is probably because reaching CCyR is a really good thing and should be celebrated as it provides similar survival as MMR (there is literature but I don't have it saved anywhere to provide a link).  

We often lose sight that there is a wide range of responses from those who don't hit 10% at 3 and 6 months, struggle to get under 4.0%, bounce around 0.1-0.9%, and hit MMR at lightning speed.  The latter two being great.

I get that being under 0.1% would bring peace of mind and agree with that 100% but in reality nobody has a guarantee of anything.  Even those in very deep MMR have the same diagnosis.  Nobody can erase that day when we were told the bad news.  Concentrate on the good news, and that is that this is one of the most treatable forms of cancer.  New research is continually being done and 4th generation and combination treatments are on the horizon.  I hope never to need them and choose to be grateful for CCyR with the occasional day when I let the what if's bother me some. 

Sorry for long reply just my thoughts.

Karthikeyan, no reply was deleted and in fact looks like it's showed up.

Hi Alex,

A few thoughts spring to mind ... firstly, nothing magic happens in the body at 0.1%. It's there as a line in the sand as statistical data sets have to be built on numbers. But you are damn close to MMR, and the fact that it's not rising significantly is good.

Secondly, is your hospital / lab on the IS system? And if so, are you sure that your results are reported on IS? For example, at Barts where I'm treated all results are given on the local scale, even though there is an IS conversion factor

And lastly, are you taking any other medication that could be interfering with nilotinib?



Rt-pcr numbers puzzle me. While trying to make sense of test results I came across documents that analyzed the difference between results that a number of test kits generated (I wonder if people realize that even before IS conversion different test kits can generate massively different results, and yes some are more accurate than others) and others on the variability of results produced in each kit (sample collection, sample processing, etc.).

My conclusions: 3.0 Log/4.0 Log/4.5 Log are all statistical milestones. They exist for the sole purpose of giving medical professionals guidance on the course of the disease. They are not carved in stone and reaching them has no binary impact on CML. If we think for a minute why 0,1%? why not 0,15% or 0,2% or even 0,05%? The disease does not obey to set decimal numbers other than a zero, that’s a multi-decimal zero. Are they relevant? Certainly. Should they be interpreted to the decimal figure, I don’t think so, especially in your case since the number is dancing around the 0,1% mark. Trends are far more important because with time they neutralize the problems above. Unfortunately, trends take time ... months or even years. When do decimals become relevant? when over a long period of time (or short for some people) you are able to reach undetectable and even then one can reach the milestone and it serve no benefit because the likelihood of failing a TFR try is higher than 50%.

Because the long-term prognosis for the disease is generally positive (specially if one has reached CCyR, which by the way that starts at 0,9999%) hitting these becomes more of psychological obsession - I don’t want to fall behind!  But the reassuring part in all of this is MMR does not provide a better long relative survival rate when compared to CCyR, in fact I have seen studies in which it was actually worse.

Mate your reply is perfect and just what I needed. Sometimes it’s a case of reframing things and I always say to myself I am lucky to be CCYR like you for almost 2 years. The milestones are a constant cause of anxiety and pressure that none of us can control. I am just grateful I am still in that place. But I was initially devastated and very shocked that 6 months of pills hasn’t pushed it down finally into officially MMR.

Ill just have to wait and see what the mutation screening says and hope it’s one that’s treatable if I have one.

Honestly thanks so much for your kind reply it’s made me feel so much better.

I wish you all the best also


Hey David,

Yeah that all makes sense. It’s just very frustrating but I must remain grateful for at least making it this far and so far.

Yes it’s IS the PCR is done at the Kings lab. And not on any other medication at all. And take my pills x4 daily at the exact time everyday. I guess maybe Nilotinib isn’t the one to get me there but might prove to be with and increase to 800mg.

Hopefully I’ll have the mutation analysis soon and hope it’s one that’s treatable if I do have one. I would have thought I’d need to see a considerable climb for it to be a bad one?

Many thanks for taking the time to reply to me.


That’s a very clever way of looking at things. Just so much emphasis on the MMR it does become an obsession and I have to accept maybe I’ll never be MMR. As long as I am stable and CCYR as you say it’s no real benefit being any thing other than that. Thanks so much to take time to out to reply to me.


Hey bud, for one, you look rather young and we tend to be slow meeting the official marks, generally. Secondly, Tasigna seems to produce a prolonged plateau effect for a good portion of patients. You shouldn't worry. From everything I've read, a mutation will show up as a sharp rise, and be confirmed with a second sharp rise in confirmation tests following. Specialists tend not to change treatment unless ccyr is lost >1.0% i.s. Tasigna statistics also produced the most promising results with no patients progressing or transforming while on it (I forget which).

Thanks so much mate I’ve been trying to put it out of my head it is worrying to have hit a no change so so close to MMR that I am being teased lol. Yes I am fairly young just had my 40th bday on Monday (I feel older haha). That’s really reassuring I’ve been worrying I have a bad mutation the mind loves to play games I tell you. But I am trying to distract myself until I get the mutation results. I am hoping it’s a plateau and I’ll eventually dip again. I was in absolute bits when I found out, it was like being in the diagnosis seat all over again. A day I like to block out as much as possible. Really appreciate your words.

All the best to you


I completely understand, and don't fault you for it. I'm a few years younger, but close enough. Haha. A to another concern you mentioned being that you're at 24 mo. on a 2nd gen, you're actually lower at in your pcr and experiencing smaller fluctuations than I was at 24 mo. on Bosulif by that point- (about .4). My results finally hit the mmr point at about 27 months and have further declined with fluctuations up here and there, since. Currently 3 years later I've consistently stuck around .012%. I wonder what would have happened with out the different med changes, but I've felt the best with Bosulif, regardless. Take good care, friend.


My journey was similar to yours; taking Tasigna 600mg daily and struggled to get below the magical 0.1%. It took me at least 3 years to get and stay below 0.1%. For reference I was 32 YO at DX 10 years ago this year. The only thing that I did differently was becoming absolutely strict with the 12 hour split on the daily doses - I was previously being a bit more liberal i.e. 10 and 14 hours. 

I have been below 0.1% for 5+ years and was undetectable at my last PCR. You are at a sustained CCyR and that is good enough; anything else is icing on the cake. You may well find your levels decrease over time, but the only thing it really affects is your state of mind. 

Easier said than done, but try not to focus on it; but look after your health, diet and well being and the rest will/might follow.  

Best wishes




Hi Chris,

I really appreciate your reply. Wow good to know you finally got there. I take my meds strictly at the same time each day at 8am and 8pm. I have an app that reminds me daily. A few times I’ve taken tablets past the 8pm reminder but we are talking 30mins max a handful of times in 2 years so I don’t think my adherence has been an issue.

Yeah what has become clear to me is that we all obsess over these numbers far too much. And I’ve stopped comparing my journey to other people’s response even though trajectories look the same their are so many different factors to consider. I am grateful to be in CCYR and hope that at a minimum I stay their. I also hope my mutation analysis doesn’t throw a massive spanner in the works. One things for sure this disease messes with your head more than anything else.

Very reassuring to hear your story and wish you continued health and success.

All the best


Thank you for posting this.  I know there are others (between age 30-45) that have taken longer to get there than most people.  This is encouraging.  I will make a note to be strict on my 12 hours between doses as I have been doing more of 10-14 hours.  I think once people get comfortably under 0.1% they tend to check the forum less and as a result we don't hear a lot about similar cases.  Thank you again.

Absolutely mate it would be good to hear from other slow responders especially those on a 2nd gen drug as it does seem we are few and in between. But as you say “we’re all right jack” no need visit the forum I guess. Did your doc perform a mutation analysis? I am awaiting my next gen sequencing result but my doc just said it takes ages to receive them here in the UK it’s been 6 weeks here so far. To add insult to injury things seem to take soooo long here it drives me crazy. But I have to be grateful we get treatment for free here and access to any drug. Very lucky considering.

Take care


My first next generating sequencing blood sample got lost in the system. I had to start again and have been waiting since March this time round. The samples are sent to Kings for the CALLS trial. 

Blimey yes mine were sent to Kings also. I think a lot of COVID samples are sent to kings and PCR tested also. Maybe that’s effecting timescales! Either way it’s a hideous amount of time to wait and of course worry!

I have not had a mutation test but really think our numbers could not approach so close to MMR if one were present. I truly don't worry constantly and as long as I am close to MMR I suspect we will continue on current regime and plan. I asked about increasing dose and my oncologist didn't even feel that was warranted as my numbers are close to MMR. As I mentioned the only thing I do plan on changing is being very strict on the time I take meds.

I have my next labs on the 19th so I will keep you posted.

Yeah that’s what I was hoping for but you never know with this stuff. Good luck on the 19th keep us posted.


I was in the same place as you guys; MMR not yet reached and I became a little disappointed with my progress when others seemed to be well ahead a shorter time after dx. I too had my bloods checked for mutations but came back clear - I'm sure yours will too.

Combatting this disease can be a marathon.

Thanks Chris!

Yes it’s a marathon and not a sprint but it is a race I’d like to remain in haha. It is disheartening to see things going slowly or not budging as quickly as we’d like but I’ve now learned not to compare my journey to others. It’ll happen when it happens or it won’t. So close so I’ll be grateful for that for now.


Just wanted to relay since good news. If you recall I was a similar responder. Experiencing upticks regularly since diagnosis, and missed mmr. My recent tests had shown several, albeit small increases i.e : from .011 to .021 to .017, and then today had a steep drop, despite having my labs drawn in the afternoon as opposed to morning (fresher sample pickup) that result at .004%. Also have had a bit of uncommon joint and even tongue pain and a few swollen neck nodes (benign on u/s) which has had me a bit stressed.

All in all, this disease is a vicious psychological burden, but stay positive, and follow adherence guidelines and monitor food, drug and herbal interactions. Best luck.

Thanks mate that’s encouraging to hear and fantastic news for you. I hope to one day have those numbers. My doctor doesn’t even consider this an uptick but effectively the same result as my previous. Luckily for me he is always super relaxed. I am hoping it’s a plateau that’s going to give in sometime. Annoying it descided to be a plateau right on the line. So typically me! Does make you wonder what actually goes on in the body to cause the plateau, I almost visualise it like constantly placing weights on a surface and when the weight is heavy enough it punches through. It’s reassuring that my uptick is hopefully that and not the beginning of something else. You are absolutely right this disease for me is more of psychological burden.

I take no herbal supplements. Take my meds exactly as prescribed. The only difference in the last 6 months is I gave up red meat, ate more fruit (not grapefruit or pomegranate), x4 Brazil nuts a day (gave them up since my last result as made me paranoid that was interfering) and have a daily Actimel probiotic (still take) and exercised way more.

Thanks again for your encouragement.


That may be the cause right there. High fiber intake (especially psyllium husk, i.e metamucil) can prevent medication efficacy across the board. I've experienced spikes during diets such as you described and with increased exercise, no lie. I find taking my medicine free of food or drink with lactose, and with some type acidic sports drink like Gatorade and eating some high carb or semi fat food yields better results for me typically, and reduces likelihood of nausea. Best luck

Blimey I didn’t now that. For a long time I was having a morning shake consisting of, blueberries, raspberries, spinach, actimel, alpro almond milk, banana and peanut butter. Tasted amazing: did this most mornings for a good 4-5 months in the last 6 months and wonder if that has effected absorption. And exercise effecting BCRABL??? OMG now I can’t even exercise 🤦‍♂️. Well I have ditched my shakes now haven’t had one actually for a couple of months - the disease is an absolute head f@&k...

I'm not advocating avoiding exercise, but I did experience increases during heavy gym dedication. There was a study a few months ago confirming bcr a bl does spike following exercise though too. That said, eat healthy and exercise just be mindful of what you consume for the first few hours around medication.

My low result this month, assuming it's real, also follows 3 months of no gym because of c o r o n a

Links to early research verifying CCyR as a significant milestone

Time to achieving CCyR and MMR with frontline TKI's in CML-CP, reflects similar prognostic implications regardless of the modality of frontline therapy used to achieve it. However, earlier achievement of CCyR with nilotinib or dasatinib results in a higher percentage of patients obtaining the long-term benefit associated with early responses.

This paper is from 2011, subsequent work has validated this result. Complete cytogenetic response is the single most important indicator of progression free survival in CML.

That’s interesting I was hitting the weights pretty hard x 3 times a week for at least 4-5 months of the 6. Also cardio. I wonder how on earth it increases BCRABL and why this isn’t mentioned more if that’s the case. I will continue to eat a balanced diet not too extreme either way from now on. See if that makes a difference.

Cheers Scuba. I wonder why when we reach CCYR it isn’t celebrated as much as MMR. My doc a while back said we tend not to get too excited when people reach CCYR which is odd if it’s the most important milestone - I am grateful I am here at the moment and hope one day permitting I’ll get lower numbers into MMR. Frustrating to be on the line of this clearly physiological obsession of being in MMR when most people are by this time.

Damn I found that study - why are doctors not warning us of this and how the hell is it increasing BCR-ABL levels? Scared now to exercise lol. The plot thickens again. This is far from a “normal” life surely.

Need to relax on this one. Exercise is great for you and helps your TKI do its job.

I'll explain.

Often scientists look at data in isolation from a cause and effect point of view.. We vary one parameter and then measure a result for a system response. Then we draw conclusions. These conclusions can often be wrong, but are a starting point. In reality, biology is more of "circuit" with interconnected parts engaged in hysteresis feedback loops. Change one thing and many things can change often affecting the original interpretation of the data. This is why no one experiment is definitive and more study is often needed so that a true "cause" and "effect" can be determined.

In the paper you link above (from 2011), they report bcr-abl increases following exercise. By itself, one would worry. But think about what is happening and was revealed in other research.

In exercise, overall white cell count goes up - particularly T-cells (which fight cancer) as well as neutrophils. These cells are stored in the spleen ready to be deployed quickly (as opposed to being "made" in the bone marrow). Upon exercise these neutrophils are released straight away into the blood and are now circulating for a time. They get picked up by the nurse's syringe when the blood is sampled. This is why bcr-abl goes up. The reverse would be true if you donated a pint of blood and then had a PCR test done. You'd think you were cured!

This is why bcr-abl on its own must be interpreted in context over time. Over the course of a day, bcr-abl is probably varying a few fold (as your article pointed out) but mostly within the PCR error test range. Any increase or decrease should be examined over several tests measured weeks to months apart. What the paper doesn't reveal is what happens to bcr-abl after exercise stops for an extended time. During this phase, white cells are scavenged back into the spleen or recycled.

A true worrying bcr-abl increase would be if the cells are being generated in the bone marrow as part of a leukemia stem cell expasion. That would be a concern. The only way to know if that's the case would be to have a bone marrow test (aspiration). Not worth the pain or cost if PCR is not trending up over a longer period of time having nothing to do with exercise. Different biological systems at work (spleen release vs bone marrow) measuring the same parameter (bcr-abl).

Also - it depends on type of exercise and perhaps gender.

In women, aerobic exercise has been shown to decrease WBC count

All this means is biology is complex (especially at the gene level). But, I would still avoid a PCR test right after a one hour hard workout! Why get all worked up with a higher bcr-abl number you did not expect!

(side note: I had a PCR and CBC taken right after a 3 day fast and before eating. They though my WBC's crashed and I needed urgent medical care. I told them I had not eaten in a few days  - no worries. Next test a few months later, WBC's were normal. Since I was undetected before and after the fast, I have no direct data on fasting impact on bcr-abl although there was this paper:


Yeah man, don't panic. My personal theory is to consume the medication in an empty stomach, hungry with a small meal of food comprised of quick and easy digestion. With a slightly acidic sports drink to help it hit the blood stream quickly and easily. Then I'll wait about 6 hours to eat again in hopes that every bit of that medicine has absorbed and does its job and I maintain higher blood concentration for longer. If I falter on this, I experience small fluctuations.

I think with exercise it may be due to your body producing new blood, giving a higher concentration of bcr abl? Don't know, just my guessing. That said, I'm hoping to get back in the gym and shed these quarantine pounds regardless.

Thanks for the very detailed explanation Scuba. You’re always a great source of encouragement and source of material. I suffer unfortunately with Anxiety have done for years so for me having something like this can trigger a barrage of worry for every little thing. I am mostly doing well but I have times when maybe I look into things too deeply and over worry. I exercise for my mental state as well as looking and feeling good for myself. I am learning to relax more I just didn’t want to do anything that jeopardises my ongoing response.

PS I didn’t workout before my PCR test, but I was working out with weights (pretty heavy to build muscle) and cardio X3 times a week. I did also increase my protein intake ie Tuna, Chicken breast etc...

Thanks as always.


Yeah I have to do that with 3 hours fast in the morning and 3 in the evening as I am on Tasigna. I never eat in that window and only an hour after medication as prescribed. And as I said exercise and diet in moderation. When I say exercise it’s quite heavy weight training and cardio. I put on some good muscle but I won’t want to continue if that causes a change in my response. Difficult to know with so many variables. Thanks for your advice mate. It’s appreciated.

I thought I would post this article (I'm sure it has been posted previously but I have not seen it).  It is very interesting in that, if I understood it right, most all TKI's have similar outcomes in the long term and CCyR is highly predictive of OS (similar to MMR).



"Furthermore, CCyR at 6, 12 and 18 months also significantly predicted for longer EFS, independently of the TKI modality. Furthermore, achievement of CCyR at 12 months was significantly predictive for FFS, TFS and OS irrespective of TKI modality."

"We also compared EFS according to the type of response achieved at 12 months i.e MMR alone vs CCyR with no MMR vs no MMR, no CCyR. As expected, patients who achieved 12 months MMR or CCyR without MMR had better EFS as compared with patients who did not achieve MMR or CCyR (P<0.0001) (Supplemental Figure 4)."

""The kinetics of the response to imatinib 800 and 2nd generation TKI show that there is a higher rate of the deepest responses (e.g., MR4.5). Although the rates of MMR reach similar levels by 60 months of therapy, the rates of MR4.5 remain higher with imatinib 800 and 2nd generation TKI than with imatinib 400."

The one above caught my attention in that Imatinib 400mg reaches MMR similar to the others at 60 months.  Of course 60 months is way past 12 months so I think reading between the lines will help us to not worry as much, or as often as we do about MMR NOW!

"These deeper responses do not seem to offer a benefit in the risk of transformation or death, but are important if one is to consider treatment discontinuation which is currently only considered for patients with sustained undetectable transcripts."

The one above pretty much states my feeling exactly.  Deep response is awesome but mostly only significant if TFR is the ultimate goal (Not overall survival).  Of course I would love TFR, but OS is much more valuable to me with three kids at home.  

Just thought I would post for those in CCyR who are worried about not reaching MMR quickly.  Keep getting your labs every three months and monitoring that you stay under 1.0 and are either going down or on a plateau and I think things look promising.



Thanks man!

That is very promising I reached 0.7% at 5 months of treatment so I’ve been in CCYR for 18months. I did understand MMR or deep MMR is with the prospect of TFR. I personally have no interest in TFR (continuous checks and paranoia). I’d far rather pop pills for life although toxic it’s the lesser of 2 evils for me. All I care about is having life like you I have a wife and a small family. In years to come when numbers hopefully are lower my mindset may change. Too much emphasis on MMR if it really offers no difference in OS. I get docs want to save money but surely saving lives is more important.

Good luck on the 19th I eagerly await your result.


I am pleased to announce that for the first time I have reached MMR!  Not by a lot and honestly could go slightly up or down on the next one but I thank God as it is a result I am always looking for and had never reached.  0.084% IS down from 0.16%.  It has been 33 months so sloth mode but it is a marathon.  Trending slowly down.

0.36%, 0.34%, 0.12%, 0.16%,....0.084%

I have been taking D3, K2, and (Calcium/Magnesium/Zinc) for a while now and the only change I have made is being very strict on the time (exactly 12 hours apart) that I am taking the medicine.  

I hope I don't get a slight rise as I did in the previous two results as I am right on the edge of MMR but honestly it is not clinically significant for overall survival.  Still feels good though.

Wow that’s amazing mate I am so happy for you!! It gives people like me hope who has a very similar uptick as yourself 0.118 @18months and 0.164 @24 months. I guess the takeaway is it’ll happen when it happens. I’ve been eagerly awaiting your results as I knew you had blood drawn on the 19th. I am still awaiting my mutation  analysis I won’t make predictions anymore about it either way and for me MMR is icing on a rotten cake. So we shall see. I’ll update on here once I’ve had my report but either way my doc will increase to 800 if negative or switch me if positive.

Have a beer on me mate in fact I’ll have one for you. Cheers 🍻 



ColoradoGuy, That is great news! I'm really happy to hear you got under that ever elusive MMR goal. I know it has been quite the journey for you to get there. I held off on responding to your post since I was waiting to get my 30 month results. I was hoping to celebrate with you, but alas my numbers went from 0.106 (24 month) to 0.147 (27 month) to now 0.297 (30 month). I'm incredibly disheartened with these results. My oncologist says that the difference is "noise of the test" and my results are relatively flat. I asked about switching medications, and they do not want to switch medications with these results. I know the test can give up to half a log error, but I have a hard time seeing this as flat; I see it more as consecutively increasing. I am trying to remain optimistic that I have been under 1% for 24 months now, but can't seem to convince myself this is good. I'm struggling with these results. I wonder what the group would suggest if they were in my shoes? Remain on medication as suggested by my oncologist or push harder for a switch? Thank you. 

ipmaki, when CML has been rangebound, or plateaued, at low levels for a prolonged period of time, which yours has, you can usually safely gradually reduce your dosage without it having an adverse effect on your CML level.  Your CML level will typically go lower at some point in time, and will do so, regardless of the dosage you are on, be it Sprycel 100mg, 70mg, 50mg, or 20mg.  Consider this an opportunity.  


I do believe that CCyR is great and had found comfort in research that it is no difference in overall survival once you have been there for a couple of years.  I don't see why switching should be such a big deal if you clearly have responded to Sprycel and can always go back to it.  Other than the headache of providing doctor authorizations and coordinating with insurance I would say this could be done in less than 7-10 days.  I also see why they don't want to mess with it though.  Keep in mind they see a lot of people with a lot worse side effects and probably worse numbers too.  I do miss taking one pill and not worrying about fasting.  I have three alarms set up for daily nilotinib (two to take it and one to let me know not to eat anything for the next three hours in the afternoon).  I have also heard that Bosutinib can cause blow ups...yes that kind which I would not want.  The NCCN guidelines changed the chart to make under 1.0 as target reached for a reason.  Hang in there and I hope you get going the other direction and closer to and under 0.1 soon.  

I am a little bit worried too. I become 40 next week and I am diagnosed with CML from June 2018. Still no MMR at 24 months.

Last year (july) (BCRABL 0,74% IS) they switched me from Imatinib 400 to 600 because my target through levels were too low. (< 1000 ug/L) It was 720 ug/L.

There was an immediate decline in BCRABL after 1 month (0,35% IS).3 months after it was 0,25% IS and in march 2020 it was 0,17% IS. However last month (after 24 months) it was 0,29% IS. 

My doctor adviced me to think about Dasatinib 140mg.

I am worried about the side effects from Dasatinib. Do not know what to do. My next appointment is in september.

I hear you too mate! It is worrying when our numbers seem “stuck” even if that means a slight increase in our cases. Maybe we focus too much on the numbers and not our overall health too much. It becomes an obsession of not being left behind when so many others seem to do so much “better”... and so much quicker. Not everyone reaches MMR and that’s something some of us have to accept. As others have pointed out clinically it offers no advantage over MMR other than doing TFR which for me I am not interested in. One day I may be but the worry of having no treatment would be a physiological nightmare if this is what life is like on treatment that is working. Give me a 100% cure and all be all over it. Has your doctor not ordered mutation analysis too? I wonder why my doc did when I am very close to MMR maybe just procedure but does this mean I could have a mutation even if the numbers haven’t shot up or are plateaued. Doesn’t seem to be a consistency between patients and doctors. Who knows.

I guess the take home is we may never hit MMR or we may hit it one day. I read a post on here where a lady had only just started reaching numbers lower than 0.2 and she’s had CML for 9 years. As NCCN has done anything under 1% is where you need to be and if you go lower all the better but it really offers no benefit. Of course I’d like to be MMR (for a kind of closure point of view, but anyone can loose MMR) but I won’t crave it like I used to and I won’t live my life revolved around a decimal point... everyone’s days are numbered and I don’t want to waste what time I have left however long that is obsessing over it. As long as we are less than 1% and stable we have to learn to accept that might be a place we stay. And a good place as far as I have seen. What we all really want is some kind of certificate to say “you’re gonna live buddy” and MMR is kind of that. But it should be CCYR that gives us that “closure certificate” not MMR.

If you read other posts your recent uptick is “noise of the test”. I see this a lot. I would imagine your next test would be lower. I read taking the same sample over and over would produce different results each time. Its just psychologically taxing when things go the opposite direction and can effect every part of your life. I know it has mine from time to time. Sleep, work, depression, you name it.

Again you are CCYR so we are in this same boat in seems. Let’s hope we get some lower numbers unfortunately x1 or x2 tests isn’t enough to assume meds aren’t working correctly. It’ll happen when it happens. My fears where always if I didn’t hit MMR by 18months they’d send me for a BM transplant. Illogical I know but when you’re anxious you make all kinds of crap up in your head.

Stay in touch and share your concerns it’s the best way to deal with this poxy disease.

Yes. I want that 100% cure too. TFR is for me also very good, but I do not want to gamble with my body. Who can guarantee that I will reach DMR and that I can discontinue treatment and that it will not come back ? Maybe it will come back and then I suffer from pleural effusions from dasatinib ...


Everywehere, I read that people are looking for a 'true' cure by eliminating the stem cell pool. There is a lot of reasearch that gives hope.

Haha everyone does! But as you say I won’t take the gamble myself. Sure TKIs are toxic but it’s the better of 2 evils at this moment in my life where I am 40 years young and have a small family and I won’t gamble anything for life. For some of us TFR is a dream just reaching MMR is a struggle for this small select group. But we are responding and some don’t at all so gotta be grateful for what we have at the moment. And if one day we reach TFR stage then it’s something to consider depending on where we are mentally and physically in our lives. That for me is a million miles away.

That "noise of the test" I can believe.

I reached CCyR at 9 months (0,57% IS). 3 months after it was 0,84 %IS. So they measured again 1 month after, and it was 0,74% IS again. (all with Imatinib 400).

You are aslo 40. lol

I hope that there will be combination medice in the near future, so that we all reach TFR.

Exactly that. My family always say to me worry when your doctor worries and he’s never worried yet. Rather than focus on the magic numbers I will focus my energy on that for the time being. Yes 40 was diagnosed like you @38. A day we all will never forget unfortunately. But apparently it’s the one C you want to get if you ever get one. Aren’t we lucky 🤣

Yes I was diagnosed one month before my 38st birthday.

I think my doctor wants me to try TFR because we are still young. I know a fellow 9 years already in TFR .... He must be very lucky.

But my doctor said 9 months ago, he has one patient on imatinib 400 for 15 years and the bcrabl is between 0.1 and 1. No MMR... He says that he does not have the experience that it will go wrong earlier than in MMR.

Me too 2 months before my 38th!

Yes we are still young and it does make sense for those with many years ahead.

Wow that is extremely reassuring and I wonder why that person never switched or increased dosage. I guess being this close to MMR isn’t a concern. If you start rising above 0.5% maybe that raises some alarms. Thanks for that info it does make you have hope hearing these stories and their aren’t enough of them on this site. Only those in MMR. Would be good to hear from some other CCYR hoverers. We are a select bunch it seems.

But why are we not in MMR yet ? Is there any reason for ?

Who knows mate. I know younger people seem to take longer maybe our bodies defences allow a certain amount of the drug through or when CML has a blip in production some more of the drug slips through and attacks. From a science point of view I guess it’s comparable to being in MMR 3 but not MMR4 or MMR5. Takes a while to drill down or maybe the profile of our current drug blocks enough but doesn’t block as effectively as another shaped molecule ie drug.

My Doctor says the same aproximately.

He says it depends on the biological processes in your body ...

The problem is, beause I have also asperger, I want to know everything about the disease ...

Yeah I suffer from anxiety too and mental OCD traits so I have to understand everything and fix everything and if I can’t I am hopeless.

Lets hope that either A we get lower numbers or B have stable numbers where we are. And no progression!

All the best stay in touch!

argearge - I've come in on the tail end of this, but I hear your plea.  It took me 22 months to reach MMR back in 2009.  I have been MR4 or better for about 5 years, so don't over-despair.  Back then there wasn't so much of a focus on achieving these timeline points.  I understand how science does need to codify and set protocols, but there is an emotional risk for the patient!  I do think you should give dastinib a try, but I wouldn't start at 140 - I'd start at 100 and quickly move down to 50 if you get a good response.  You'd have a far better chance of staving off the main worrisome side effect of dasatinib, pleural effusion, that way.  You fit a sort of profile in your slow response to imatinib and nilotinib (which are chemically kind of similar) that often shows a remarkable plunge when switched to dasatinib.  There is no harm in trying it for a short while - you would know within 6 months if you were going to get a significantly better response - and pleural effusion doesn't show up that fast (unless you're on 140 mg, anyway).  

Thank you, I will see about 3 months at the next check up. What is the risk about PAH ? 

If you have MR4 for more then 5 years, are you not in TFR yet ?

Does somebody have experience with Bosutinib ? Seems that should be safer.

Much smaller risk for PAH.  As for TFR, the only two things that have changed about that are: with the advent of the 2nd (and 3rd) generation of TKI's, people are getting to their individual best result much faster, and the criteria for attempting TFR have become a little looser.  The actual percentages of successful TFR have remained the same.  Not everyone will reach "undetectable," to start with.  I don't know the figure, but my onc estimates about 10% of CML patients.  Of them, about half have succeeded in long-term TFR.  I have never been able to reach undetectable (well, one test a few years ago) and now, in my 11th year, I am grateful to be keeping two zeros to the right. I am not going to worry about TFR.  I'm on 20 mg dasatinib and the side effects are extremely minimal.  I had been a turtle on imatinib the first two years, but the real reason I switched was that for me the side effects were intolerable.

Well today my husband saw his consultant & after 5 yrs he has reached MMR. Hovered at between 0.7 & 0.2 for yrs on Nilotinib since dx with WBC at456
Was on 600mg switched to 800mg 18 mths ago. Had a negative mutation test some time ago. His path has been a bit up & then down, very slow,but last 3 pcrs have been 0.097,0.07 & 0.063.

That is great! Congrats. As I mentioned before it took me 33 months so it does happen. There are not a lot of us but I don't think anybody in CCyR for a few months should worry or lose hope of reaching MMR. New category of sloth. We are slower than turtles but our response to TKI's is steady and consistent.

Oh wowzers that is fantastic news I am so pleased for you both and this has given me yet more hope. For the time being I’ll learn to live on the edge of MMR until that does happen. I really really appreciate you taking the time to reply to this channel. As coloradoguy said we are sloths not turtles haha. Still no update on my mutation report it’s been 3 months and I was told it was slow. My blood is surely out of date by now even if on ice🤣. I guess those who start from a higher point takes longer in my case wbc of 330 and platelets of 900 at diagnosis also. I was in a bad way.

Ill have a drink for you both. Wonderful news.


My first blood sample was sent to King's on 17 January 2020 for the NGS CALLS trial. That was presumed lost in the system. My second blood sample was taken on 11 March 2020. Again, I have heard nothing. It may be that COVID-19 has got in the way of the trial or it may just be a lame duck initiative.

Gosh still no news for you too!! I do think COVID is playing a part as they use PCR testing for that analysis as my friend works for a supplier of PCR machines to labs. I guess no news is good news. At least I am holding onto that. We’ll see.

Thank you for posting this. I achieved 0% FISH at 11 months (CCyR) and just squeezed an MMR at 21 months. My MMR was lost again by whisker at 24 months. I appear to be plateauing around about MMR but now suspect that a deeper response is unlikely. My consultant told me that this is quite satisfactory.

Did you get your NGS result? I got mine after some pressing. It just came back as "zero mutations". 

Hey there, sorry to hear that you lost MMR after achieving it after your switch to Dasatinib. What a rollercoaster!! No news on my mutation report it’s been nearly 6 months which is an absolute joke considering you can get a covid test in 2 days turnaround. And that disease for the best part doesn’t even kill!

I PCR test again on the 19th and when I get the result via phone I’ll ask what’s going on. The way I see it it’s not my job to press them and it’ll be negligence if they’ve lost it and something is wrong after next test. I was worried sick about the mutation stuff but I somehow stopped caring a few months ago. I suspect it’s been lost! But I guess we will know more at my next test if I am MMR or not which I am not holding my breathe for, I just hope I am stable.

Thanks for checking back and hope you return to MMR soon.

Thank you, Alex.

My consultant did explain that PCR laboratory findings do vary from day-to-day and that the variation in my result from the last to the present is statistically insignificant. Therefore, I appear to be stuck around about MMR with zero mutations on the next-generation sequencing investigation. My consultant assures me that this is quite satisfactory and I need not be concerned.

Indeed, it is disconcerting when posters (who are super-responders) are alarmed that their PCR has increased from 0.0001% to 0.0002%. You are quite correct that we should not be comparing our personal result with others.

I have been told that the next generation sequencing tests for mutations are giving results, for the main part, identical to the standard local laboratory tests. 

Let us know how you get on.


Hey guys,

I finally made MMR @2.5 years 0.072% so I plateaued at around 0.1% for a whole year. My mutation report I was told you get no news if no mutation, wish I’d know this previously. And reaching MMR now suggests that not one is present that matters thank goodness.

I suppose the good thing for me is I test less often than most my consultant has always done 6 monthly checks once I reached CCYR at 6 months which removes a lot of those bouncy numbers others share. I am confident now you’ll reach it, stay the course this thing does move again.

All the best guys



Alex, good to hear this. I plateaued (there are too many consecutive vowels in that word) around 0.5% from 9 months in to 18 months, and then went down to around 0.05% (The number is on a post from around 2007 but can't find it.)

Best wishes


Thank you Alastair,

It sure does feel good I’ve not stopped smiling for the past 3 days.

Those pesky plateaus I am sure it won’t be the last. Glad to get over the MMR line finally.


Alex Congratulations!!So happy for you!!