23 replies to this topic

[CallMeLucky]

A second opinion at Shands is probably a good idea given that it is uncommon to relapse so late in the game.  On the other hand, resistance does happen and since we have other drugs it doesn't have to be a major issue if you switch drugs and regain your response.  Get your second opinion, make sure there was nothing unusual in the BMB and then switch drugs.  Sprycel is probably the best bet unless the BMB showed something that would suggest otherwise.

This is unsettling and it sucks, but good reason to believe that with the options available today it is very likely you will get it back under control.

Best of luck.

[Trey]

The  PCR numbers show you are stable, and the BMB was obviously negative so you are well beyond CCyR and likely close to MMR.   I do not see any reason for doing anything extraordinary unless it makes you feel better about doing something. 

You do not seem to be certain about your prior PCR history, so you should get copies of the reports.  Some docs or nurses will tell a patient that they are "negative" but that could be a FISH instead of a PCR.  I don't know if that is an issue for you, but I have seen a number of people become confused about this.

[ruag8tr2]

Update- I went to Shands and saw Dr. Wingard. He told me that one test was not enough to draw any conclusions and recommended I go back in three months for another pcr. I went and got the results back yesterday. The results are as follows:

0.291 - pcr test in February

0.303 pcr test this week. 

Looks to me like this is almost the same.  My local oncologist advised he would send the results to Shands and see if they believe the trend is to increase and possibly change medicines.  Any responses are appreciated as to opinion about the number.

Thanks

[CallMeLucky]

Like you said the number is pretty much flat, so good it did not go up but it also didn't go back down suggesting some possible resistance.  Obviously see what the specialist tells you to do, I would expect them to switch you to another drug and most likely Sprycel.