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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.

Alex

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

Alex

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 nilotinib.no 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?

David.

 

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

Alex

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.

Alex

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.

Alex

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

Alex

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.