Suziq I am due to see Dr. Cashen at Siteman March 2nd. Are all tests being done in house? I just lowered my Tasigna to 300 mgs and am concerned about your test results. Thanks Holly
Sent from my iPhone > On Feb 11, 2015, at 8:44 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.
