Hi everyone! I was diagnosed with CML March 2017. My initial results were great (Immatinib 400 mg). My 3 month result was 1.2% and 3 months was .54%. However, my 12 month result, which I received today, was 0.2%. My oncologist told me that I was supposed to have hit the 12 month benchmark of less than or equal to 0.1%. I'm now awaiting today's bloodwork, which will determine if I need to do a bone marrow aspiration. I'm scared...really scared. I'm 38 and a mom of 2 little kids. Has anyone gone through something similar??
Sonia
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12 Month Blood Results
Sonia, while you are not quite at the benchmark, you are pretty close, and closer than I was a year after starting imatinib, which I did in 2007. The error band on the test is +/- at least 0.05% if not more, so you could well be just about there. I got below 0.1% at 18 months, undetectable 6 months later and now 9 months in to a trial reducing imatinib to 200mg. There was a thread with a similar question a few months ago which David summed up well. "The protocol says of after a year you haven't got to 0.1% the consultant should consider options. In your case they would look at the results and say the best option is to continue as we are."
Hi Alastair,
Thank you for your response. It has definitely helped knowing that you were able to achieve an undetectable response after not hitting your 12 month benchmark. My oncologist didn't give me much information, other than potentially having to do the marrow aspiration and changing to a second generation TKI. In any case, your story has given me hope that I can still get there. Thank you for sharing.
Sonia
Sonia - You are absolutely all right, as Alistair has said. Many of us have not hit our benchmarks perfectly and have gone on to MMR, DMR, and beyond. When I started (2009) they didn't have the 12 month deadline anyway. I got to MMR at 22 months and these days I'm testing at 0.005. As you'll probably find as you go along, there will be random blips upward (and you will panic, unnecessarily, but understandably) and there can be plateaus where you seem stuck, hovering a little up and down around basically the same number. You'll learn to just watch the trend - if you retest in 3 months, 6 months, 9 months, and it's going down, you're doing great. I don't see any reason right now to do a bone marrow.
Thank you, Kat. I definitely feel better than I did yesterday, thanks to your responses. I'll wait for yesterday's bloodwork, and hope that my numbers went down. I'm assuming my oncologist's reaction was due to the fact that my 9 month result was 0.25 and 12 month result was 0.2. She didn't feel my numbers were going down fast enough. I'm hoping it's simply due to the 'plateau' you mentioned. Have a great day!
Hi Sonia
My number 1 piece of advice is: hang in there and keep taking the pills!
I fully understand and empathise with your fears and concerns as I was in the exact same place as you. After 12 months, I was nowhere near the "magic" level of 0.1% - I was at 0.24% and devastated. By 18 months, I was still above the 0.1% level at 0.16%. And I was on dasatinib, which is supposed to act faster than imatinib - and I had not missed one dose at all. There was talk of a bone marrow biopsy and all sorts of unpleasant things, but I stayed the course and after 24 months FINALLY hit this level at 0.05%. So in my case, it took twice as long to get there!
Some of us are just slower responders and I am around the same age as you - I turned 40 in May. I also don't know if younger adults have slower responses than older ones - from what I have seen, most of us slow responders are in our thirties, but there is no scientific evidence to show this.
So be positive, keep taking the medication and keep on believing. You will get there in the end!
Best wishes
Martin
Sonia - Keep the faith. As everyone has said you will likely get there - too soon to change the course or for BMB unless you have 2 upward trend PCR's in a row that equate to 1 log or more increase.
Sonia - Just wondering how your latest results went? I have received my 12 month results and it looks like I did not reach the desired 0.1. Here is my results for those of you who just received your 12 month results and clicked on this thread for comparison:
At Diagnosis: 64% (I know I have read diagnosis is 100% but I have the lab result that shows 64 so I'm not sure what that means)
3 Month: 23% (Scary result after 3 months but my WBC was 256 so maybe a lot of work to do initially. We prayed and pressed on)
6 Month: 1.9% (Very encouraging given the 3 month results. We thanked God and pressed on)
9 Month: 0.81% (Nice to sneak in under 1.00)
12 Month: 0.31% (Certainly not what I had hoped but we will pray and press on).
I actually had to drive to the lab to pick up result because I got a call that I needed to make an appointment for next week to get the results. That was not encouraging so I drove over there and asked for the results. I looked over the NCCN Guidelines at 12 Month and it looks like I am still in the "Stay On TKI" green range which is good. I am disappointed to be sure but will not consider switching TKI therapy even if it is suggested in my next week appointment because I have little to no side effects on 100mg Dasatinib and am trending in the right direction.
I thank God for my results thus far, for modern medicine, for my docs, and for resources and forums such as this. Take care and hang in there if you are a slow to get to 0.1 as I am.
I’m not quite ”on target” either. But there is progress.
Dx in January at age 44, BCR-ABL: 114%
3 month: 12.7%
6 month: 1.3%
WBC 323 at dx and blasts 3%, huge spleen.
I’ve had two breaks, two weeks in February and one week in July (just two weeks before the 6 month pcr), both due to myleosuppression. Still suffering a bit from it with Thrombocytes around 105. Otherwise no sideeffects.
Doctor seems not super happy, but not super concerned either, they mention maybe switching TKI later. Yet for now I remain on Imatinib 400 mg.
Any comments on the result? Would you agree with my doctor to remain with Imatinib, even if 3- and 6-month targets are not quite met, and there are some moderate myleosuppression?
I note many here seem to start on second gen TKI?
Is age a parameter when choosing TKI?
In my opinion I would not be concerned that you are not responding because you are trending in the right direction. I would be looking at 0.1 at 12 months which would be great. You may also have less side effects as time goes on. I had bad headaches and lower back pain the first couple of months and have none that I can speak of now.
I would consider having to take breaks due to side effects more of a reason to discuss a treatment change than the treatment not doing it's job. The good news is that you are heading in the right direction according to NCCN Guidelines. I will however add that I have only missed two pills total in the year I have been on Dasatinib.
I just got back from my 12 month discussion and my oncologist said I was "In trouble" and that he recommended a treatment change and bone marrow biopsy for mutation testing. He is not my original oncologist and it is actually the first time that I see him. I mentioned that I was not ready to switch TKI's because I did not believe the NCCN Guidelines recommended that at this point. He said it certainly does but I was not going to argue with him. I have scheduled my 15 month checkup with my original oncologist and will be praying and looking forward to being below that 0.1.
A second opinion never hurts when you are unsure as to whether to switch TKI's. Your doctor sounds reasonable and I don't believe that age has any bearing in selecting a TKI as these meds will affect our bodies no matter how old we are.(I'm 38).
You were just above 10% at 3 months and 1% at 6 months so I would not be ready to do anything drastic if I were in your shoes unless the side effects are telling you that at 9 and 12 months. Take care.