Hi everyone. My son was diagnosed last September (2020). He's only 17 year's old and has CML-CP. His bone marrow reports showed 100% Ph+ cells. He was on imatinib 400 for 3 months and his bcr/abl report showed 2.89%. Second report after two and a half months of this showed 0.908%. He was then shifted on imatinib tablets twice daily (800mg). After 1.5 months of 800mg imatinib, his bcr/abl went from .908% to 0.201%. However, he had side effects like nausea , weakness, low haemoglobin and weight-loss (he's currently 49kg).
Our doctor moved him back to 400mg imatinib but his most recent reports after 2.5months of this show 0.223% bcr/abl. It has increased by 0.022. Our doctor suggested waiting for another 3 months. I did not expect this report. I would appreciate if I got some dietary advice. Should I consult other specialists? I'm worried about the rise in bcr/abl. Not sure what went wrong since he was responding so well before. Pls help.
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New CML diagnosis of my son
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Hi, and welcome to this forum. I am sorry your son has been diagnosed with CML- especially at his young age. It is a rare disease, but very rare for his age group.
- My son was diagnosed last September (2020). He's only 17 year's old and has CML-CP. His bone marrow reports showed 100% Ph+ cells. He was on imatinib 400 for 3 months and his bcr/abl report showed 2.89%.
A: 100% PH +: At diagnosis, virtually every white cell in a blood or marrow sample will be Leukaemic i.e.Ph+, so the result in theory should be 100% Ph+.
However, because there is a higher % of Ph+ cells present at diagnosis, the first q-PCR test is qualitative i.e gives a positive or a negative result. Therefore at diagnosis qPCR testing is not accurate in measuring the % of PH+ cells in the marrow, which is why Ph + % can vary from under 50% up to 100%.
His first qPCR test at 3 months following the start of TKi therapy showed his Bcr/Abl % fell from 100% to 002.89%. This is an excellent response and is within the optimal response bracket of <10% bcr/abl or FISH <35% PH+.
- Second report after two and a half months of this showed 0.908%.
A: I assume you mean the second qPCR test was at 5.5 months from diagnosis? Again, 0.908% is an excellent result and shows his continued response to therapy.
- He was then shifted on imatinib tablets twice daily (800mg).
A: Why did his doctor double his dose to 800mg when he was obviously showing an excellent response to 400mg?
- After 1.5 months of 800mg imatinib, his bcr/abl went from .908% to 0.201%. However, he had side effects like nausea , weakness, low haemoglobin and weight-loss (he's currently 49kg).
A: I am not surprised he developed intolerance to that high dose.
- Our doctor moved him back to 400mg imatinib but his most recent reports after 2.5months of this show 0.223% bcr/abl. It has increased by 0.022.
A: So the qPCR results timeline is now at 9.5 months from diagnosis? His latest test shows no significant change - in other words at this very low level of residual disease 0.223% vs 0.201% - the previous result at 7 months - is at the same level. It does not represent a rise in Bcr/Abl %
- Our doctor suggested waiting for another 3 months.
A: Of course your doctor is correct to wait for another 3 months. It is likely that his % will drop again - this levelling off is very common and many many people experience this when Bcr/Abl is so low. Remember, we are looking at very very small numbers here.
- I did not expect this report. I would appreciate if I got some dietary advice. Should I consult other specialists? I'm worried about the rise in bcr/abl. Not sure what went wrong since he was responding so well before.
A: Most CML expert clinicians would consider your sons response as optimal. I understand your worries and concern, but please be reassured that he is responding to 400mg.
You might want to ask for a Vit D3 level test. This is one way to try to ensure his continued good response and if his level is sub-optimal (under 40 ng/ml) supplementing with D3 (combined with K2) until his levels are at least up to or above 60 ng/ml.
I hope this helps you and your son,
Sandy
Based on your bcr/abl figures the dosage increase masks no sense. Less 3% after 3 months is a near perfect remission path.
Are you sure you have the figures right?
How many months is he post diagnosis now?
You shouldn't be worried about his bcr/abl results and i hope you are ensuring that HE doesn't see you are worried.
The last thing he needs on top of dealing with his illness is having to manage your reactions. (I speak from some experience here). You are very welcome, of course, to look for support here anytime.
ssss, one of the biggest mistakes that oncs make is prescribing an increased super high TKI dosage, as your son's onc did, in an attempt to push through that last very low level of CML (below CCyR 1.0), which is not presenting any real danger to the CML patient, to reach undetectable. It typically results in making the CML patient worse off from the increased side-effects.
Buzz
Hi EvaH, I just checked the reports again and yes the numbers are correct. He was diagnosed in September so he just completed 10 months on imatinib.
Thank you for extending your support.
ssss, no worries about the very slight increase; it's insignificant. Your son is in a very good place after his relatively short period of treatment. A CML level under CCyR (1.0) presents no real danger to the CML patient from the disease. Hoping he will be able to reduce his TKI dosage sometime fairly soon; no doubt that at 49kg the Imatinib 400mg is weighing him down. When CML has been at a low level (under 1.0) for a prolonged period of time, generally a year, or so, on average, gradual dosage reduction can typically proceed without it having an adverse effect on the patients CML level.
Buzz