I am praying Jeanie...praying praying praying.... your body can do this....stay positive...and be patient know matter what the results.....only 16 days!! an hurray for no side effects!!!
love, Beth -----Original Message----- From: 'Icandoallttc' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Feb 11, 2015 4:04 pm Subject: Re: [CMLHope] Just checking in Hello everyone. So glad everyone is checking in. Thanks for all the updates. This is my 16 th day on ponatinib. No major side effects so far. Going to doctor tomorrow to get blood done. Also getting a cat scan done. Pray that my counts are on the way down. Prayers & Blessings Jeanie 18's On Feb 11, 2015, at 2:00 PM, "'Marcie Goodman' via CMLHope" <[email protected]> wrote: Hi SusieQ, Good to catch up with you. I know that same worry when you go from undetected to a positive reading. And you are correct that we aren't cured even if undetected, just cells hiding due to our TKIs. Hang in there and please let us know the results in March Marcie Sent from my iPhone On 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. 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