Has anyone achieved PCRu and then had this monster return? Any advice or wisdom you can share? Dx in Sept 2010 and became PCRu about 11 or 12 mos later. This past July my test came back with a 0.02. I attribute this to missing my meds about 20X or so over tha period of time. Now I am really concerned.
Posted 18 August 2012 - 10:02 AM
I think you answered your own question. Missed 20x. I would imagine there aren't to many people here that have missed that many doses. What where you thinking?
I was DX in July 2011. I went up and saw Dr. Druker at OHSU. The one thing I clearly remember him saying is how important it is to NEVER miss your meds. That is the easiest way to let your CML build resistance to the TKI.
If I was you, I would make sure to take evey day and get another test in two months. Hopefully it will head back down.
Posted 18 August 2012 - 10:21 AM
Adherence is key. Missing a few doses a year is probably okay, but not "20X or so", and especially not if your on Gleevec.
I hope you reach pcru again soon, and since you have been so lucky to reach pcru so quick, you could be a candidate for stopping treatment after a few years time if you are able to keep pcru, so if i were you id take the pill each day and never miss a dose.
Today i am hungover, and i didnt want to take my pill, but then i looked at my family and took it.
I too would like to have a few days off medication, but i know it will decrease my chances of survival, so i take the pill, every single day, and i hope you will as well.
Posted 18 August 2012 - 10:35 AM
I'm with Cliffie and TeddyB. Why would you miss your meds? CML isn't something to play around with.
Posted 18 August 2012 - 12:00 PM
I know it was/is a big mistake. I didn't not take it because I felt like it. That wasn't the case. I was irresponsible and I know it. I recognize the importance of it, especially now. What I am looking for is anyone who may be in the same boat or read something about such a scenario and if PCRu is a good possibility again. My onc didn't like the results but didn't seem worried about it. All he said was you can't forget to take my pill.
Posted 18 August 2012 - 02:07 PM
I would definitely think you can reach pcru again, just take your pill
If im not mistaken, the people from the STIM trials who has to start tki`s again regain pcru.
Posted 18 August 2012 - 02:36 PM
Hi: You cannot play around with your TKI drug like that, because it does give those residual cancer cells a chance to build up again. Even at PCRU, there are still cancer cells floating around even though they are not detected anymore by PCR Testing. There are a lot of different opinions regarding stopping the meds all together after reaching PCRU. A lot of people have cut their dose lower and maintained their PCRU status.
You are probably not familiar with my journey, and I have many on the board here who think I could stop my drug due to being PCRU now for 9 years, but my doctor does not want me to do it until there is more proof that it can be done.
Thats another whole subject. Take your drug faithfully, and your next PCR test should be better. You missed way too many doses. I have been on my Gleevec for 11 years, and its part of my routine every morning. Breakfast and Gleevec together every morning, and have never missed one dose. Even when I have been sick, I make sure I get that pill in to my system, but thats just me. This way you cannot forget. Whatever your routine is just make it a daily thing.
Posted 18 August 2012 - 05:14 PM
You are still at a very low level and a long way from near -term progression oF CML.
but you are much better off taking your meds every day.
Posted 18 August 2012 - 06:16 PM
Take some minutes to read this new article: New Data Confirm Safety of Stopping Imatinib in Leukemia - July 4, 2012
''The CML-8 trial involved 40 adult patients who had been treated with imatinib for at least 3 years and were in CMR for at least 2 years.''
In my case, I was treated with imatinib since June 2005 and I was CMR for 2 years (2009 to 2011). I didn't stop the treatment and I relapsed in September 2011.
P.S. More info about the STIM trial
Posted 18 August 2012 - 08:48 PM
Thanks for the info - I'm going to print it out and take it with me when I see my doctor in November. If I manage to sustain my PCRU on 300mg for the next year, I'm going to ask him if I can get into the Australian STIM trial around November 2013, that will give me over two years of PCRU.
As well as taking your medication consistently, I'm also of the belief that chronic stress plays a part in your CML levels. Was there any reason why you lost CMR after 2 years?
Posted 18 August 2012 - 11:29 PM
Gerryl I was dx this january and took tasigna I think it was the first of march, but I thought that the number you talked about the 0.02 was good.
Posted 19 August 2012 - 10:17 AM
I had a lot of stress and I had a big headache. So, I took some Advil (ibuprofen) and I think that is the reason why I relapsed.
Other link: Food and Drug Interactions
Posted 19 August 2012 - 11:09 AM
Did you take ibuprofen over a long period or just for a few days?
Posted 19 August 2012 - 06:01 PM
I'm slightly confused by your comment - but if you're at 0.02 in August and you only started your TKI in March, I'd say you're doing pretty well.
Posted 19 August 2012 - 07:45 PM
oh no GerryL, I was just asking about rickpister's statement about being 0.02, I thought that that number was good, but really do not know much about it.
Posted 19 August 2012 - 08:21 PM
rickpister's issue is he has gone backwards going from 0.00 to 0.02.
Posted 19 August 2012 - 09:49 PM
Hi Gilles: You would not have relapsed after taking Ibuprofen for a few days. Did your response get back to where it was since that happened? How are you doing now?
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