Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hi Tracey, I read through the FAQ you posted. It looks great! I wish there was a document like this when I was diagnosed. I have one (maybe two) suggestion, would it be possible to include a paragraph on drug and food interactions with Gleevec. Not sure if this is possible, I would also suggest that the section include recent findings/recommendations for the treatment of side effects. For example, since my second bout of myelosuppression (low platelets and neutrophils) my hematologist was looking into the use of Neumaga to combat my low platelet count. Due to Dr. Druker's recent recommendation to avoid the use of Neumaga, my oncologist has backed off me trying Neumaga. What do you think. Hope everyone is doing well. Take care. San Francisco, CA Dx: 9/04 Gleevec: 10/04 400mg CCR: too early _____ From: Tracey [mailto:traceyincanada@...] Sent: Monday, March 21, 2005 2:07 PM Subject: [ ] New File (FAQ) Hi Everyone, I just wanted to let everyone know (especially the newbies) that I created a CML FAQ and put it in the files section. I'm hoping that it will help answer some of the basic questions that most new members have. If anyone has any other questions that they think should be added, let me know and I'll be happy to add them. To go to the file, just click on " files " at the left of the screen then click again on CML FAQ.doc. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 Hi , Thanks for the compliment I'll look into the food and drug interactions, that's a great idea to include. As for the myelosuppression, I did include what Novartis recommends (Gleevec be stopped when counts fall to a certain level) but I could always add the various options available to deal with these issues such as Neupogen, Neumega, Procrit etc... with the emphasis that every doctor will have their own way of dealing with it. Thanks for the suggestions, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Adding the options would be great. Take care. San Francisco, CA Dx: 9/04 Gleevec: 10/04 400mg CCR: too early _____ From: Tracey [mailto:traceyincanada@...] Sent: Monday, March 21, 2005 3:03 PM Subject: Re: [ ] New File (FAQ) Hi , Thanks for the compliment I'll look into the food and drug interactions, that's a great idea to include. As for the myelosuppression, I did include what Novartis recommends (Gleevec be stopped when counts fall to a certain level) but I could always add the various options available to deal with these issues such as Neupogen, Neumega, Procrit etc... with the emphasis that every doctor will have their own way of dealing with it. Thanks for the suggestions, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hi Tracey, My fingers slipped and I sent the previous message before I was done. I didn't mean to discuss myelosuppression specifically. I was using myelosuppression as an example. As you know, many of the official websites aren't always up-to-date with the latest recommendations and new treatments. It would be great if somehow we could incorporate information about new treatments and expert recommendations for treatments (such as optimal/sub-optimal Gleevec dosing, use of new drugs such as Procrit and Neumaga to treat side effects [such as, Neutropenia or Thrombocyopenia]) in the FAQ. I hope this makes sense. If it doesn't, please let me know so we can discuss it further. Thanks. San Francisco, CA Dx: 9/04 Gleevec: 10/04 400mg _____ From: Tracey [mailto:traceyincanada@...] Sent: Monday, March 21, 2005 3:03 PM Subject: Re: [ ] New File (FAQ) Hi , Thanks for the compliment I'll look into the food and drug interactions, that's a great idea to include. As for the myelosuppression, I did include what Novartis recommends (Gleevec be stopped when counts fall to a certain level) but I could always add the various options available to deal with these issues such as Neupogen, Neumega, Procrit etc... with the emphasis that every doctor will have their own way of dealing with it. Thanks for the suggestions, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Well done, Tracey. Thanks for putting this together. Adrienne Tracey <traceyincanada@...> wrote: Hi Everyone, I just wanted to let everyone know (especially the newbies) that I created a CML FAQ and put it in the files section. I'm hoping that it will help answer some of the basic questions that most new members have. If anyone has any other questions that they think should be added, let me know and I'll be happy to add them. To go to the file, just click on " files " at the left of the screen then click again on CML FAQ.doc. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 > Hi Tracey, > > I didn't mean to discuss myelosuppression specifically. I was using > myelosuppression as an example. As you know, many of the official websites > aren't always up-to-date with the latest recommendations and new treatments. > It would be great if somehow we could incorporate information about new > treatments and expert recommendations for treatments (such as > optimal/sub-optimal Gleevec dosing, use of new drugs such as Procrit and > Neumaga to treat side effects [such as, Neutropenia or Thrombocyopenia]) in > the FAQ. _______________________________________________ Hi , I think the best way to deal with up to date treatment options and specific drugs that deal with all the possible complications of CML treatment would be to find a nice concise article written by one of the experts and upload the article in the files section. Do you happen to have one handy? I just don't want the FAQ to be too long and complicated for the new members who are already overwhelmed with the diagnosis. I mean we could theoretically go on and on for dozens of pages writing about specifics but I think it would just be too overwhelming. I only included the section on low platelets and WBC's because I've seen alot of patients getting told they have to stop or reduce their Gleevec when their counts dip a bit. I've seen some been told to stop their Gleevec with a WBC of 4 or platelets of 100 which isn't even close to the Novartis guidelines so I put that in the FAQ to give them something to discuss with their doctor. They can pull up the entire Gleevec Prescribing Information from the link I put at the end. I will however modify the section to include a statement that says there are other drugs available to deal with myelosuppression (and other side effects) and patients should discuss them with their doctor. Keep in mind also, the use of these drugs is not " standard treatment " . While many doctors do use them, the use of them are still being debated regularly and there are no set standards about how or when to use them. Thanks for your input, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Hey Tracey, Good job on the CML FAQ. We now have three good tools for Newbies, the CML primer, your FAQ and the link to the webcast from the CML Patient forum. Lots of good information for everyone here! Cheers, Cheryl-Anne > > Hi Everyone, > > I just wanted to let everyone know (especially the newbies) that I > created a CML FAQ and put it in the files section. I'm hoping that > it will help answer some of the basic questions that most new > members have. If anyone has any other questions that they think > should be added, let me know and I'll be happy to add them. > > To go to the file, just click on " files " at the left of the screen > then click again on CML FAQ.doc. > > Take care, > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Great idea - That will be so helpful to newbies! ~ in MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Dear Tracey You have done such a good job on the FAQ, I can remember asking all those questions when Rich was diagnosed, well done. You have mentioned St 's Wort being contra-indicated with Glivec, but Novartis have also advised not to take Echinacea as well. Below is an email I received from Novartis when I enquired about Rich taking echinacea. " Thank you for your recent enquiry regarding the combined use of Glivec® (imatinib) and echinacea. The two products are not recommended for use together because they are both metabolised by the liver and it is thought there is the potential for an interaction to occur " . This was received from the Medical Information Officer at Novartis. Sending lots of love and appreciation. Annette > > Hi Everyone, > > I just wanted to let everyone know (especially the newbies) that I > created a CML FAQ and put it in the files section. I'm hoping that > it will help answer some of the basic questions that most new > members have. If anyone has any other questions that they think > should be added, let me know and I'll be happy to add them. > > To go to the file, just click on " files " at the left of the screen > then click again on CML FAQ.doc. > > Take care, > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2005 Report Share Posted March 23, 2005 Hi Annette, Thanks for the information! I'll be sure to add it to the FAQ since many people may not be aware of it. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
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