1st BCR-ABL test results

Hi, I was similar in that dx 96%, 3 months 34%, 6 months 14%, and 8 months 3%. My doctor is please with my progress. As i read here some time ago some run some walk and some are tortoises, i now look at it at the 1 year point ( next week and feeling good ) not as a race, although i would prefer to be faster.

Ultimately as long as they are falling steadily and you are in the recommended guideline which i believe you are then great. Hope this helps. Also from what I read bear in mind if on Glivec generally we will be lot slower as the drug is less powerful. Clearly the drug is working for you. Hope this helps.

Nigel

Drug and food interaction chart:
http://www.cmlsociety.org/files/documents/CMLDrugInteraction2%20August%2...

Guidelines for response:
http://cmlresponseproject.com/index.php?page=cml-6-2-0

At 3 months an optimal response is CHR. This means the wbc and other blood levels return to normal, and that the spleen isnt palpable anymore.

The 10% at 3 months isnt in the guidelines yet, but remember stil those above 10% still have very good odds.

"The persistence of BCR-ABL transcript levels >10% according to the international scale (BCR-ABL(IS)) at 3 months separated a high-risk group (28% of pts; 5-year OS: 87%) from a group with >1-10% BCR-ABL(IS) (41% of pts; 5-year OS: 94%; P=0.012) "

The important thing is that you are responding to treatment, and the next pcr will give an indication on whether to switch to another tki or not.

I would perhaps ask my onc to give me pcr tests each month, so i could follow my progress more closely.

Also, Glivec might need some time to work, another fellow CML`r on another forum noticed a significant drop in bcr-abl transcripts between months 3 and 4.

On the side effects issue, mine got better after around 4 months into treatment, it takes some time for the body to adapt to this new form of therapy. If the side effects are bad over a longer period of time, then a switch might be the right thing for you.

So, keep your chin up, and good luck :)

Hi, your 1st PCR test shows a significant reduction of your PH+ cells - you have had a major cytogenetic response within less than 3 months given that you were diagnosed at the end of May..... remember that this result is from a sample that would have been taken at least 1 month ago?
(I am guessing as I am not sure how often the trial protocol says you should be tested given you are just starting).

It might well be that your next PCR result will show a much lower level- I assume that test will be from a sample just taken?

Ask your doctor for advice, especially about how you are feeling and coping with the side effects, but I would say that you should not be worried at all- it looks like you are going in the right direction and certainly within the existing guidelines.-both NCCN and ELNet. ;o)

Best wishes,
Sandy

Hi Julie,

You know I'm going to say don't worry -particularly about the rash as it is a very commonly reported side effect of imatinib. You should be able to deal with it with a short course of topical hydrocortisone (steroid cream) which did the trick for me when I had this side effect.

It is perfectly normal and a natural reaction to stress about every symptom/health problem after the shock of being diagnosed with serious disease. As your confidence grows over the next few months you will begin to be more confident and then be able to put things into the wider context.

I agree that too much information when first diagnosed can be the cause of unnecessary anxiety.
I advise you to pull back a little until it becomes more clear (with your next pcr result) exactly how you are going to tolerate (or not) imatinib.

re: the 3 months pcr result. You have had a very good result.

Try not to read too much at this stage- although I know it is hard not to- you will end up torturing yourself for no good reason.

Sandy