Hi
just seen specialist my BCR ABL has gone up from 0.0018 to 0.0019 within 3 months of being on 300mg Glivec.Did not even take 400mg for a year as was extremely depressed withbad body aches pain fatigue.
Do I change meds or stick wth 300 mg?Will I feel ok on Tasigna or Sprycel?
please advise
thanks
Tania, can you please confirm if these numbers are in %, which is the usual way BCR-ABL is reported, or if they are numbers? Either way, the increase is very small and probably within the accuracy range of the test, so not worth worrying about by itself. The trend is important however - do you have the result before the 0.0018?
There is a large variation in the blood concentration of imatinib from people on the same dose. If you are in UK your specialist can get this checked at Kings College Hospital - I have posted the link on here before but will look it out again if you need it. If 300mg is giving you the therapeutic level in your blood it would be useful to know as it would make you more confident in your treatment.
Hi Tanya,
If this result is the percentage of BCR-ABL by PCR testing, then there is no difference between the 2 numbers. So it looks like you have held your deep molecular response (CMR) on 300mg imatinib. You should ask your doctor if you could reduce the dose even further as you are obviously clinically sensitive to imatinib and if you still have side effects another dose reduction could help alleviate them further.
Sandy
Thanks guys but it is in % but don’t know much more however doc said if it keeps increasing may have change meds?I just want stick on glivec anc hopefully lower dose as it’s given me dreadful depression and fatigue and put me into early menopause...will keep you posted as am having monthly blood tests now I am in Australia so if anyone knows of any good support groups or docs here,that would be great !Thank you for listening to me
Tanya, if these results are in %, based on my experience they do not provide a reason for considering changing meds. The difference is negligible, and well within the accuracy if the test process. They are in practical terms the same as Sandy has said, and you are maintaining a very good response on 300mg. Around 9 months after I was diagnosed I was cut to 200mg because my WBC was very low, but my PCR % did not progress so I went back to 400mg and got 0.00% 2 years post diagnosis. 9 years later I am holding > 0.005% happily on 200mg, and will likely try to give up taking the pills shortly to see if I can get into Treatment Free Remission. My consultant has said recent indications are that this is more likely to be successful after some years on TKI therapy; we will hear more about this at the UK patient day on Saturday 22nd. That session will be streamed on-line, but at night for you in Oz, Many of us will be there and if there is anything comes up of interest in your case I will let you now on here.
Tanya,
Alastair and Sandy are absolutely correct. There is no difference in your results.
In fact, any PCR measure below 0.01% is indistinguishable from PCRU (i.e. 'undetected'). Many false positives can occur below this level. The 'third' decimal place is irrelevant and I wish the reporting labs would stop listing it. It's meaningless.
You could have a string of results: 0.0018, 0.0019, 0.0020, 0.0021 and they mean nothing in terms of trend.
The only trend that matter is if you experience a log increase from one test to the next. For example, if your results went from 0.0019 to 0.02, or higher. Then I would want to investigate alternatives - and then only if there is a follow-on trend up, from 0.02 to 0.2.
You could consider changing TKI drugs to manage side effects, however. Given your outstanding response on Gleevec, you could consider changing to a very low dose Sprycel (20 mg) for therapy maintenance. Chances are it will keep you at a functional PCRU. I take 20 mg Sprycel. I have no side effects I can feel. And I am PCRU (at least until my latest test result comes back!).
Lower Gleevec dose further is another option, but Gleevec is more dose dependent than Sprycel.
Overall you are doing Fan-tab-u-lous. Congratulations!
(and yes, Romo - that is a word)
Tanya - Sandy, Alistair, Scuba - all have given you the correct advice. I would only add that I also had severe depression and fatigue on Gleevec, and this all got much, much, much better on Sprycel. On Sprycel, also, my PCR decreased pretty dramatically. Win-win. "They" still don't list depression as a side effect for Gleevec, and I was just so desperately doggone physically sick on Gleevec that it was hard at the time to know which came first the chicken or the egg, but in hindsight oh yeah, the depression came with the Gleevec. And went away on Sprycel. Please don't put up with it!
Depression is the other side of CML.
What depression does is slow down
body energy. And this allows disease
to take advantage of lower energy.
Disease is an evil force that will destroy life energy.
Whether it be mind or body.
Surviving this natural anti-life force defines the person.
It is a difficult and challenging life to live with this.
Many people have thrived with much harder obstacles
and lived creative and accomplished lives.
It’s not easy being CML.
I speak from experience.
Romo
