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ELN or NCCN?

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Hi everyone

I have just received my six-month results after being on dasatinib since December 4 2015 and I am hugely disappointed. BCR-ABL is only at 1.4% from 72% at diagnosis and only a small drop from 2.7% at 3 months.

My doctor is not worried at all as she says that the target is 1% after 12 months as per the NCCN guidelines, but I am personally very concerned as I have not yet even reached a CCYR after 6 months of being on the strongest drug (and I have not yet missed a single dose).

I know that some people respond slowly to the drugs but I cannot understand how I have only come down 1.3% in three months after having had such an excellent response in the first three months. When reading this forum, I see many people reaching the milestone of CCYR with ease after 6 months and I am worried that Sprycel does not seem to be effective in my case. Any advice or suggestions would be very welcome! I did expect the drop in BCR-ABL to slow down by now, but never in my wildest dreams did I expect to still be above 1% after such a good early response.

Thank you in advance for any help.

Best wishes to everyone

Martin

Hi Martin,

I understand why you are disappointed but you should temper your disappointment with the knowledge that this is not an exact science - time of testing and consequent pcr result. PCR is such a sensitive test that several things could have influenced the result.... e.g the control gene should be at at least 10,000 copies for an accurate result to be generated. the sample your gave some 4 (?) weeks ago may not have had enough copies of the control gene in - maybe ask your doctor for this information. Also some people just take a little longer to get to the 'optimal' response. NCCN and ELNet guidelines are just that - guidelines. If your next result is the same or similar then you and your doctor could look for reasons why. I think you need more than one test result - 2 at least - before you start to worry. You are right, your response from diagnosis was certainly optimal but as I say above, it could just be due to a sample not being 'optimal' enough or kept in the wrong conditions at the lab, for too long before testing or for some other unknown reason.

1.3% is virtually CCyR (1 - 1.5%) so you are in range.

Try not to worry too much at this stage. You have had a very good response well within the guidelines and it may well be that your next result will show a further drop. I assume that will be in another month? You could say that that will be the actual 6 month sample. NCCN and ELNet are pretty much in line. 

Sandy

Hi Martin,

Sorry for the short message. I don't have time right now for a long one but wanted to reply.

I too take dasatinib. After almost 2 years from diagnosis I was above 1%. Another 18 months after that, I'm down to 0.008%. 

In my experience, the drops don't come at regular intervals. If you do a trend analysis you can see a downward trend, but that doesn't mean that every 3 months is better than the last. 

I know we all want the lowest number, and we want them ASAP but you are in a good place in terms of response. It's just human nature to always want better!

David. 

Dear Sandy and David

Thank you so much for your quick response and for your kind and wise words.  I have read so many of your replies to other CML patients and your words carry a great deal of weight, particularly since you have both travelled down this rocky CML road for such a long time.

In South Africa, we wait only two days for our blood test results, so this sample was taken on 27 June and I had my follow-up appointment with my oncologist only three days later!  We are lucky to have such fast healthcare services here at the bottom tip of Africa, but sadly these services are available only to the fortunate few who can afford to be on private medical care.  This means that my 1.4% result is from 207 days since starting on dasatinib and I was hoping for at least one zero, but your comments and advice have put things into perspective and have made me feel slightly more positive.  The haematologist is very pleased with my progress and says that a 50% dip (from 2.7% three months ago) is a very good sign and that I'm well on my way to attaining the 1% level soon.  Also, all my blood counts are within normal levels - not a single one is even below or above what is normal for a person without CML.  Furthermore, I am incredibly fortunate that I have never had any side effects apart from a rash, which covered so little of my back that I didn't even consider it as a Grade 1 rash.  So maybe I should be grateful - I guess I'd rather have a slower drop with no side effects than respond faster and later become intolerant!

It's good to know that results can fluctuate and that many factors determine the result.  The heamatologist said that I'm in great shape and that I should see her again in three months' time, so I've decided to shelve this CML and forget about it until then.  Darley is always an advocate for "mind over matter" and I guess, while I'm feeling healthy, I should just stop worrying and see what happens.

Thank you once again for all the wonderful work you do here on this forum.  CML is quite a lonely road because it is such a "mild" cancer, at least symptomatically, for many that friends and family seem to forget or deny that one is ill.  It's hard for many patients, especially in countries where there are no patient meetings or support groups, and just having a place to share thoughts and to read about the experiences of others makes the world of difference.  If I were the Queen, I'd put you two, Darley and Nigel on my list of New Year's Honours for sure!

Best wishes from South Africa and good luck to Wales in the Euros.

Martin