notes from Prof visit

[Guest guest]

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