Roberta, You should look for some university or institution in Italy that has some research for CML. They may help you to get tasigna and also about this taste problem. Ricardo.
On 11/24/08, Roberta Pinalli <[EMAIL PROTECTED]> wrote: > > Dear all, > my mum was diagnosed in August 2007. She started with Gleevec but > unfortunatly it didn't work for her, so she switched to sprycell in february > 2008. Unfortunately, Sprycell was worst than CML for her, terrible side > effects. One of these was the total loss of the taste. Since August > 2008 she came back on Glivec, waiting for Tasigna (in italy it is not > available yet), but she doesn't recover the taste. > Can someone help us? Has someone the same problem? > > Thnaks a lot for any suggestion! > > Roberta > > --- *Dom 23/11/08, rien jonkers <[EMAIL PROTECTED]>* ha scritto: > > > Da: rien jonkers <[EMAIL PROTECTED]> > Oggetto: [CMLHope] Re: Cramps - arms & leg > A: [email protected] > Data: Domenica 23 novembre 2008, 12:13 > > Ciao a tutti! Dear friends; as I read all this stuff about coffee, I > felt a little bit depressed! For someone who lives ans works in Italy; it is > nearly impossible paying no attention to all this wonderful coffee > offers.... I have been on glivec since march 2003 and particularly in the > beginning (as I still lived in Belgium) I had the usual terrible cramps, in > toes and fingers, but at that time in my arms too, so that I coud not even > drive a car. Having read about all the negative effects of grapeftuits, > milk and caffeine, I have been following this practice, which appears to > help: I always have breakfast at 7.00, with always a banana (beacuse of my > colostoma I have to avoid the diarrhea at any price), a piece of bread with > Dutch cheese or a boiled egg, tea, water or apple/ananas juice. I then take > my 600 mg of glivec as well. (I had from time to time some nausea, but this > a relatively rare). At 8 I start my job and the first espresso I take, comes > around 8.30. I experienced that cappuccino causes more problems, the > espresso does not. According to the Italians, their coffee is healthier, > because of the fact that it is made under very high pressure and in a few > seconds, whereas the other technique (always according to my Italian > friends) produces more caffeine in the coffee.... I do not know if this > is true; but I get only small cramps (during not longer than 1 minute) in a > single finger sometimes during the day; and when I have been working very > long, I sometimes get cramps in my leg (lower part, from the knee) during > the night, which is very unpleasant and can last up till 10 minutes. Having > been a colon cancer surviver for 11 years now and doing well on glivec for > more than 5 years (I never reached the complete cytogenic remission, but > the values are very low) I am very grateful to the work of the scientists! All > the messages posted here are of great help as well, so thank you all! I > still work, but now, in my 41th year in the filed of education and on the > age of 62, I think about ending my carreer abroad and to return to my > homecountry the Netherlands; not because the CML, but in order to be able > to see my family and friends much more! I hope my positive results can > contribute to optimism of fellow patients who need it!! Cordiali saluti, Rien > > > > > > > > --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
