Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 > > > Wow all very interesting stuff! I am noticing however that there are different trains of thought concerning reaching PCRU. I have seen that some Dr's believe reaching CCR and staying there is the main thing and others saying PCRU is the way to go (and within a year). I am going to Houston in July and Dr. Cortes right hand man (Pat Ault, who is actually a female) has indicated to me that if I have not reached PCRU by July (my one year anninverary on Gleevec) he will be looking to switch my meds. I know Dr. Cortes is one of the leading CML specialists so I will be hard pressed to argue with him. Apart from weight gain (20lbs) and fatigue I have NO other side effects so feel incredibly lucky and am lothed to try something else. Your thoughts please? (anyone) Donna x > G'day everyone, > > > > Well I was lucky to get into Australia's leading CML specialist Prof Tim > and was excellent talking to him. > > > > Just to give a brief report on my consult with Prof - he feels Glivec > at 400mg is a toxic dose for me and that I need to go back on Glivec at > 200-300mg daily and see what my serum level is in 3 weeks when I will be > back in Adelaide. He was astounded (his words) that my PCR had dropped from > 13.01% in January to my latest PCR in April of 0.08%. He had been giving me > a big lecture about the need to get on top of the disease as quickly as > possible and as I hadn't got my latest PCR back, he rang the lab and got it > - in fact he said he wouldn't believe it until he actually saw the fax! As I > have been off Glivec for 4 weeks, he redid my PCR and I will have another > one in 3 weeks also. > > > > So, his main message was we have to hit the leukies hard and get CCR within > 12 months, as if you get to 2 years and no go still, then makes it harder to > keep the disease at bay and prevent relapse. This was really good for hubbie > to sit in and hear. He also said that if PCRU has been sustained for 2 > years, then could go off Glivec/ whatever and just monitor with PCR tests. > Aussie Drs like to hit this disease flat on the head quickly!!! > > > > The other interesting bit of news was the research that is being done on the > long term effects of Glivec - not the side effects, but rather long term use > (despite it being a " targeted " drug) and what it is doing to other parts of > our body eg kidneys, bone density scans and whether it may be a contributing > factor to other cancers. Prof felt the 10 year data on Glivec was > great and because of this, was the best drug to use until further data has > been collated re Sprycel and Tasigna. > > > > If I still have problems with Glivec, then he will definitely put me onto > Tasigna, which he feels would be the drug of choice for me. I discussed > briefly the QT prolongation issues with Tasigna and he said all patients > have to be screened first with ECG, but the main one was that Tasigna has to > be taken in a fasting state (which I'm sure those listers who are using this > drug would know) and definitely shouldn't be followed by a fatty meal within > a couple of hours of taking this drug. > > > > We touched briefly on " womens " issues with hormones - there was an > acknowledgement of the issues. > > So - for me was a great experience and one that I feel very comfortable with > and can " share care " with my haem/t. > > > > > > > > Regards, > > > > from Downunder > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 , Thanks so much for taking the time to fill us in on what Dr. told you!! It is so helpful for all of us to hear what the experts say. Wishing you the very best in finding the correct dose of Gleevec for your body! JoAnn > > > > G'day everyone, > > > > Well I was lucky to get into Australia's leading CML specialist Prof Tim > and was excellent talking to him. > > > > Just to give a brief report on my consult with Prof - he feels Glivec > at 400mg is a toxic dose for me and that I need to go back on Glivec at > 200-300mg daily and see what my serum level is in 3 weeks when I will be > back in Adelaide. He was astounded (his words) that my PCR had dropped from > 13.01% in January to my latest PCR in April of 0.08%. He had been giving me > a big lecture about the need to get on top of the disease as quickly as > possible and as I hadn't got my latest PCR back, he rang the lab and got it > - in fact he said he wouldn't believe it until he actually saw the fax! As I > have been off Glivec for 4 weeks, he redid my PCR and I will have another > one in 3 weeks also. > > > > So, his main message was we have to hit the leukies hard and get CCR within > 12 months, as if you get to 2 years and no go still, then makes it harder to > keep the disease at bay and prevent relapse. This was really good for hubbie > to sit in and hear. He also said that if PCRU has been sustained for 2 > years, then could go off Glivec/ whatever and just monitor with PCR tests. > Aussie Drs like to hit this disease flat on the head quickly!!! > > > > The other interesting bit of news was the research that is being done on the > long term effects of Glivec - not the side effects, but rather long term use > (despite it being a " targeted " drug) and what it is doing to other parts of > our body eg kidneys, bone density scans and whether it may be a contributing > factor to other cancers. Prof felt the 10 year data on Glivec was > great and because of this, was the best drug to use until further data has > been collated re Sprycel and Tasigna. > > > > If I still have problems with Glivec, then he will definitely put me onto > Tasigna, which he feels would be the drug of choice for me. I discussed > briefly the QT prolongation issues with Tasigna and he said all patients > have to be screened first with ECG, but the main one was that Tasigna has to > be taken in a fasting state (which I'm sure those listers who are using this > drug would know) and definitely shouldn't be followed by a fatty meal within > a couple of hours of taking this drug. > > > > We touched briefly on " womens " issues with hormones - there was an > acknowledgement of the issues. > > So - for me was a great experience and one that I feel very comfortable with > and can " share care " with my haem/t. > > > > > > > > Regards, > > > > from Downunder > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 G'day Donna - yes it is interesting! I must say that it is well known that the Aussie Dr's are certainly very aggressive and proactive in treating CML over here. I did speak to Dr re the fluid retention and he said (as we know) that Glivec and Sprycel are well known for causing fluid retention and that Tasigna has been great so far and doesn't seem to be a problem. Even though I had a 4 week break, I think this time it took 3 weeks to finally get rid of the excess fluid (but not other weight I had put on from Glivec) and my eyes to return to " normal " LOL. Fatigue....... it has been wonderful to feel " normal " again in that aspect! Regards, from Downunder _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: Thursday, 15 May 2008 1:59 AM Subject: [ ] Re: notes from Prof visit > > > Wow all very interesting stuff! I am noticing however that there are different trains of thought concerning reaching PCRU. I have seen that some Dr's believe reaching CCR and staying there is the main thing and others saying PCRU is the way to go (and within a year). I am going to Houston in July and Dr. Cortes right hand man (Pat Ault, who is actually a female) has indicated to me that if I have not reached PCRU by July (my one year anninverary on Gleevec) he will be looking to switch my meds. I know Dr. Cortes is one of the leading CML specialists so I will be hard pressed to argue with him. Apart from weight gain (20lbs) and fatigue I have NO other side effects so feel incredibly lucky and am lothed to try something else. Your thoughts please? (anyone) Donna x _ Quote Link to comment Share on other sites More sharing options...
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