Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Hi Mark, I know how scary this can be but you need to know that mistakes DO happen. IF (and that's a big if), the increase is in fact valid, then you should have a mutation test done to see if you have a mutation. That information will be useful when choosing another drug because some mutations respond to some drugs better than others. Try not to panic. My first thought is that this is probably a mistake but even if it's not, there are several options available to you now that will give you hope for a stable outcome. Let us know what the second test says, Tracey > > Hi Guys, > > Some advice please I have just received my latest PCR test, my history is as follows: > > DX October 2008 > > Baseline PCR 113.552% > January 2009 PCR 1.183% > February 2009 PCR 0.468% > July 2009 PCR 18.204% > > I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3month period. > > I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error?? > > Am I over reacting some advise would be really helpful. > > Regards > > Mark > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 > > > > Hi Guys, > > > > Some advice please I have just received my latest PCR test, my history is as follows: > > > > DX October 2008 > > > > Baseline PCR 113.552% > > January 2009 PCR 1.183% > > February 2009 PCR 0.468% > > July 2009 PCR 18.204% > > > > I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3month period. > > > > I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error?? > > > > Am I over reacting some advise would be really helpful. > > > > Regards > > > > Mark > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 > > > > Hi Guys, > > > > Some advice please I have just received my latest PCR test, my history is > as follows: > > > > DX October 2008 > > > > Baseline PCR 113.552% > > January 2009 PCR 1.183% > > February 2009 PCR 0.468% > > July 2009 PCR 18.204% > > > > I am not sure of what to make of this one has anyone seen this kind of > jump before, I have read many posts and seen increases, but I was doing > excellent and then a big shock, it's jumped high in a 3month period. > > > > I am on 800mg of Glivec and I am now panicking!!!! I am having a new test > carried out next week as they have said it could be an error?? > > > > Am I over reacting some advise would be really helpful. > > > > Regards > > > > Mark > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Hi, Mark. Tracey is absolutely right, you should try to stay calm and wait for the trend. Believe me, I know how difficult that could be. I have had this kind of scare two times when I received an off the wall number after being extremely low or PCRU and when I retested, it turned out to be an error or a blip. I hope everything works out and that it was just an error. Stay positive. NYC > > > > > > Hi Guys, > > > > > > Some advice please I have just received my latest PCR test, my history is as follows: > > > > > > DX October 2008 > > > > > > Baseline PCR 113.552% > > > January 2009 PCR 1.183% > > > February 2009 PCR 0.468% > > > July 2009 PCR 18.204% > > > > > > I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3month period. > > > > > > I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error?? > > > > > > Am I over reacting some advise would be really helpful. > > > > > > Regards > > > > > > Mark > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 Hi Mark, Hang in there. You are allowed to panic. I'm sure that I would too. I have more questions than advice. It takes 3 consecutive test results to establish a trend. So you have to wait a bit. What I don't understand is the erratic frequency that you are being tested. 3 months, 1 month, 5 months. Also, did they do a BMB at diagnosis? Why are you on an 800 mg dose? The normal dose for CML is 400 mg. Are you seeing one of the CML experts at Hammersmith? Are all the PCR results reported as percentages? I told you I had more questions than answers. The good news is that you hit CCR and are entitled to a number in the Zero Club. Let's wait until your next test before I shout it out. Now is not the time to celebrate when there are so many unanswered questions. Keep hanging in. Zavie Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of comkick@... Sent: August 7, 2009 10:35 AM Subject: [ ] 2 Log Increase???? Hi Guys, Some advice please I have just received my latest PCR test, my history is as follows: DX October 2008 Baseline PCR 113.552% January 2009 PCR 1.183% February 2009 PCR 0.468% July 2009 PCR 18.204% I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3month period. I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error?? Am I over reacting some advise would be really helpful. Regards Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2009 Report Share Posted August 7, 2009 > > > > > > > > Hi Guys, > > > > > > > > Some advice please I have just received my latest PCR test, my history is as follows: > > > > > > > > DX October 2008 > > > > > > > > Baseline PCR 113.552% > > > > January 2009 PCR 1.183% > > > > February 2009 PCR 0.468% > > > > July 2009 PCR 18.204% > > > > > > > > I am not sure of what to make of this one has anyone seen this kind of jump before, I have read many posts and seen increases, but I was doing excellent and then a big shock, it's jumped high in a 3month period. > > > > > > > > I am on 800mg of Glivec and I am now panicking!!!! I am having a new test carried out next week as they have said it could be an error?? > > > > > > > > Am I over reacting some advise would be really helpful. > > > > > > > > Regards > > > > > > > > Mark > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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