Hi Suzieq, Don't worry about this to much. Remember there was a different lab used and they used a more sensitive test. I would just wait until your next ABL/PCR test and see what happens. I have already seen this many times.
I keep on saying that there will be a cure for CML soon. It is only a waiting game just like my kidney transplant. I have been waiting for almost four years for it to come, just like you waiting for that cure. It will come! They are always making progress. In my day there was no TKI's but only a bone marrow transplant and I just used my perseverance to go on, and so should you. Just look at how long you have been on a TKI and your still here. Now isn't that saying something? You bet it is, and you mentioned that this will always be a fight for our lives. Suzieq, there will always be something that makes us fight for our lives. When one thing is over with then something else pop's up, it is just how one deals with it. Your living your breathing and you get up every morning. What else can you ask for?. This is how I look at life and I am now 70 years old and still kicking Azz even with what I am going through. Just consider it a bump in the road. And you already know me. I don't give pep talks just using my logic. So, till tomorrow. Love ya Suzieq. 18's, Marty On Wed, Feb 11, 2015 at 9:44 AM, Suzieq <[email protected]> wrote: > Hello CML Survivors: > > It's been some time since I stopped by and left word. Thought that I > should check on ya'll.....sorry to hear of the troubles you are having > Marty. I do hope you receive your Kidney and all goes well. Jeanie...I > see you are having a few problems once again and I hope that the doctors > can get you back on track. So many newer drugs now than when we all started > our journey with Gleevec. > > My last doctor visit was December 31st. Had really good blood work > results and all looked good until I got my BCR-ABL results back. They did > not tell me that they were going to use a new lab.....instead of sending it > to where they always did, they (Sitemen Cancer Center) are now doing the > testing in-house. I knew that the results had come back a lot quicker. > Nothing like what I was use to, no graph, nothing. Just said *"Positive"* > &* 0.02%.* I fell apart. Course this was around 7:00 at night when I > had picked up the mail after going to the movies. My husband was out of > town. The next morning (Friday), I called and left a message for the > doctor to call me back. It was around 4 that afternoon when the NP called > me back and we had a nice chat. That's when she told me that "we really > can't go by these results since we are using a new lab. And, it was a *"more > sensitive"* test." I asked her if I should up my dosage (remember I have > gone from 400mgs. down to 200, & now to 100mgs. since I've been > *"non-detected"* since *July '09.* She told me no, to stay doing what > I've always done and that if I wanted to come back in earlier than the ever > six months as normally, I could. So, we set that up where I will go back > next month (March) the 25th and be retested. > > I guess I was so use to seeing that "non-detected" over a long period of > time, that it gives one that false belief that we are in total remission > and the CML is gone. It's like my husband & I discussed......a few of the > leukemic cells are still there all along, just do not show up unless they > use deeper tests. This positive test brought me back to reality and > reminded me exactly what Dr. Khoury told me in the beginning of my journey, > "There is no cure for CML yet." > > So, there's my story. I guess we will always be in this fight for the rest > of our lives. I'm hoping to continue on just the 100mgs., but if I need > to go back to the higher dosage, I will. > > Keep Looking Up, > Suzieq > > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
