Dear Rakesh, I am glad to touch base with you, we haven't talked for a long time. I am really sorry you are having this pain. Roy has been on Gleevec for 6 years now and no pain like you describe. What Susan R has said in a separate post called 'Pain' is very reasonable. You first have to find out if Gleevec is the culprit and one of the ways to do it is to take a Gleevec break with your doc's blessings. What the CML experts are now recommending is that time in CCR is a prognostic factor for relapse risk. If a patient has been in CCR for 2 years, risk of relapse is less. If they have been in CCR for 5 years, risk of relapse is even less. You have been in CCR for a very long time and Gleevec is working well to control your disease. What Susan says is true, most docs would treat the symptoms you are having and if it is a side-effect, manage the side-effect.
While switching drugs can be done, bear in mind that the new drugs have side-effects, too. Barbara has posted that she had pain on Gleevec but not on Tasigna. Skip has posted he has pain on Nilotinib. What you probably did not realize was that Tasigna and Nilotinib is one and the same drug. Tasigna is also called Nilotinib and AMN107. So, two patients on the same drug have different side- effects. Side-effects can be patient specific. I have not really seen anybody changing drugs unless they are very intolerant. And you do need to determine whether Gleevec is the culprit. Regarding pancreatitis, Tasigna (Nilotinib) raises the pancreatitis markers in the blood called amylase and lipase. And I know 2 patients who did develop pancreatitis on Tasigna. I echo what Susan said. Find out if Gleevec is responsible and only then take action if the symptoms cannot be managed. I am glad you remain in CCR, so does Roy. Warm Regards, Anjana wife of Roy d/x Jan 2002 400mg Gleevec PCR 3.9log On Mar 22, 1:17 am, r doshi <[EMAIL PROTECTED]> wrote: > Thank You all for replying to my message. I really appreciate it. I > did talk to my Oncologist and he thinks the pain is not related to > Gleevec as most people gets side effect when they start Gleevec but > after sometime side effects go away. I did not have any of this pain > when I started Gleevec in 2001. This just started 1 year back. So he > does not agree with me that this could be Gleevec related.! > > I will see if my Oncologist can check into other options like Tasigna/ > Nilotinib etc. or at least look into the Pancreas issue. > > What pain medicine you all take to get rid of the pain. I know taking > them long term is not good for kidney/liver. > > Thanks again for your thoughts. > Regards, > Rakesh > --------- > --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
