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It's been almost two years and still not in CMR range.

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Hello,

   I'm just curious of others experiences in taking time to get to complete molecular response. In all the information they gave me two years ago (age 35), it seemed like I should be in CMR by at most of a year and a half. My doctor did say I came in with a lot of disease when I started as it seemed imatinib (400mg) did nothing for the first three months. My white cell count at diagnosis was 400ish. Unfortunately, I haven't had full access to my blood records until recently so I was never fully sure of my BCR-ABL results.

Over the next several appointments with my oncologist he had been going back and forth with keeping me on imatinib or taking me off. It was around the one year mark I had come under 1% he told me (0.9%, he later told me). It seemed over the past 9 months, I'd average 1.5% decrease in my BCR-ABL tests every 3 months. Then we had my next test around October of last year and I had only gone down by 0.1% (I was given results in November), like the imatinib had just stopped working suddenly.

I was then switched to Dasatinib (140mg), started end of December. My next blood work was in January and followed up with my oncologist in February. It seemed after two months of remaining on imatinib and one month of Dasatinib he told me I was down another 0.3% (Assuming, this should have me around 0.5% on my BCR-ABL test by this point). He was happy with that, but here is where things get tricky to me...

I had to get of my esomeprezole (40mg) because you're not supposed to mix PPIs with Dasatinib, well my heart burn was so bad, I was having trouble swallowing my pills... my oncologist worked with the pharmacy and found a study from Japan that showed that 16 patients went into remission just fine while on PPIs, not much else for information, just a conclusion with not a very large test pool. We put me back on a PPI at half the dosage (20mg) and I was to manage my heartburn and now I can swallow better again. Come my next appointment, and now that I can see my blood results, I was only down to 0.28% on my BCR-ABL test, which from what I can tell is that after three months of Dasatinib and PPI, I only came down 0.2%, this was frustrating to me as I was expecting to be near or at CMR, now I haven't been able to really compare my old results, since I could never get them before. My Oncologist was okay with the results and said we should be there soon. He said he doesn't believe the PPI is affecting my dasatinib too much, but seems like there is something wrong here.

Its been almost two years now and will be two years by my next appointment. I decided to take it upon myself to now also further remove my PPI, by only taking my 20mg every other day, and that seems to be going okay and is manageable heartburn wise. Guess I'll see my next results in another 2 months.

Anyone else been seeming to have the process of just this dragging on, is this normal? Or does it seem like it was because I came in with so much disease, as I was told.

Thanks.

 

It took me sometime to find a good regime. After much experimentation, I take 100mg of dasatinib immediately before going to bed (say 22:00). I take 30 mg of lansoprazole at 09:00 with a shot of Gaviscon Advance (prescribed by my GP). I judge later in the day whether I need more Gaviscon Advance. The clinicians and pharmacists that I have consulted are not too worried about taking up to 30mg of lansoprazole provided that there is a good time separation before taking dasatinib. I am a slow-goer: after fours years and a failure with imatinib, I am maintaining a BCR-ABL of 0.02%.

P.S. Gaviscon Advance works far better for me than the ordinary Gaviscon.

P.S. In the UK, a stronger version of Gaviscon is available. It is called Gaviscon Advance. Its concentration of alginates is about 10 times that of the US version.

hi, I was in the same situation that I need to have antacid everyday.  But it does not seem to affect the efficacy of the drug.  I have experimented taking Tasigna with and without the antacid pill, they did not affect blood result.  My doctor said the second generation TKIs are very potent and should be absorbed within half an hour.  I find my blood results are more related to stress and life style.    It took me more than 5 years to reach CMR.  The BCR level went down for a while and then plateaued for long time, and went down again.  Just be a bit patient and have faith. 

William   

I was on Imatinib for almost 11 years and never achieved CMR. My doctor wanted to switch me to nilotinib years ago but I thought, in error now when I look back, that I will always have to take a drug for this condition so why switch and have to acclimate to yet another set of side effects. My numbers always dropped ever so slightly so I stuck with it. I developed a stomach issue in 2021 and was put on omeprozole. My numbers got very close to CMR. I was excited to say the least. But in Feb of this year my numbers jumped up and I finally decided to go on nilotinib. So far so good, it’s going down again and I hope I can reach CMR by the end of the year because I am enduring the full 800 mg per day. Some people are lucky to reach CMR early, I am not one of them. Hope that gives you some perspective. Stress does play a role in my opinion so keeping that controlled is important.

grilledcheese, my body evidently never read the studies that said I should be here on such and such a date and there at another date. As long as I took my meds it did what it was going to do. I was diagnosed in 2008 and did not reach CMR until 2016. I had some issues with low blood counts, liver toxicity and pleural effusions but eventually I got there all the same. Don't worry about being a rabbit - if you're going to get to CMR (and not everyone does) you will. Good luck!

This may be a stupid question but what do you mean by CMR?  I have googled this and it seems to say a PCR showing no BCR-ABL so i assume it is classified as undetected or 0.000 so is that what you were expecting in just a year?  

I am not well versed in the abbreviations as my diagnosis was a long time ago but i thought the main aim was to get to 0.01 or below but everyone is different and some people don't get close to that. I am sure others know more than me about this but i would not think that your response is slow at all but your consultant is the one who would tell you if there was a concern.

Sorry if i have not understood the position or current terminology.   

There are a few milestones we all try to aspire to as CML patients. There are many acronyms and I confess I may not know them all. But in general there are 3 main milestones that I adhere to:

1) CCyR - complete cytogenetic response - no more than 1% of cells within bone marrow contain Philadelphia Chromosome or PH+.
2) MMR - major molecular response- no more than 0.1% PH+.
3) CMR - complete molecular response - no more than 0.003% PH+ (at this point the tests cannot detect anything lower. This is considered remission but in my mind it just means it’s hiding doing it’s best to remain alive and making plans for a come back. To me BCR-ABL is like the Terminator, it will not stop ever until it either completes its mission or ceases to exist.).

Hope that helps.

My oncologist says CML is a stupid cancer because it only has one genetic abnormality.
But in my mind it’s still quite smart.

Cmr is complete molecular remission,I think it means non detectable on pcr,different lab has different sensitivities,so it might differ accordingly,mmr is major molecular remission that is 0.1 IS .