I'm surprised Dr. Mauro suggested not to take Gleevec in separate doses. Several years ago, I went to consult with Dr. Druker and complained of the intense nausea. At that time I was taking the capsules, the entire 400mg dose, each morning after breakfast. Sometimes the nausea was so bad I'd have to take half a bonamine beforehand. During that meeting, it was suggested to me that I try taking half the daily dose in the morning and half in the evening. That ended the nausea. I was worried when they changed the capsules for the tablets because I'd heard the nausea was worse with the tablets...but I've rarely had a problem. I've remained PCRU for nine years. I do wish there was some agreement on dosage, on how to handle the nausea and the other side-effects. I've never been able to get rid of the periorbital oedema, which makes things difficult and depressing, especially when I have to present myself in public, meet new people for business. My family has become accustomed to my looking like a frog, but it's often off-putting to strangers.
On Fri, Nov 20, 2009 at 5:10 AM, <cmlhope@googlegroups.com> wrote: > Today's Topic Summary > > Group: http://groups.google.com/group/cmlhope/topics > > - An Excting > Tip<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=Jd8O_KZeLH0.en.&am=!Sg304q2GSli5Bbvy0fc6WqpH7hNPvXL9bOpPuUhGpZmh#12511129d727c9fa_group_thread_0>[2 > Updates] > - An Exciting > Tip<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=Jd8O_KZeLH0.en.&am=!Sg304q2GSli5Bbvy0fc6WqpH7hNPvXL9bOpPuUhGpZmh#12511129d727c9fa_group_thread_1>[1 > Update] > - Nausea and > exercise<http://mail.google.com/mail/?ui=2&view=js&name=js&ver=Jd8O_KZeLH0.en.&am=!Sg304q2GSli5Bbvy0fc6WqpH7hNPvXL9bOpPuUhGpZmh#12511129d727c9fa_group_thread_2>[3 > Updates] > > Topic: An Excting > Tip<http://groups.google.com/group/cmlhope/t/471df9a31b6c9a18> > > bikercub <biker...@msn.com> Nov 19 12:41PM -0800 > > Why can't your husband get 100 mg tablets? I take 4 tablets of 100 mg > each. When I was on 600 mg, I took 6 tablets. I have Kaiser > insurance and I don't know if that makes a difference or not. > > I've been on Gleevec for 8 years and was on Interferon shots before > that. I've had CML for 17 years (dx in May 1992) and still going > strong! > > Tam > > > > > > > > Rebecca Russo <russo.rebe...@gmail.com> Nov 19 04:09PM -0500 > > Dr. Mauro says not to separate your dose, though. So apparently we > shouldn't be taking part of our dose in the morning and part in the > evening; > we need to take it all at once. I'm taking 800mg and this is kind of a > pain. Any other tips on how not to get sick would be great. I finally > figured out that Gleevec and coffee are a horrible mix; guaranteed > nausea! > > > > > Topic: An Exciting > Tip<http://groups.google.com/group/cmlhope/t/7a3f39e532010da6> > > "kevin.l.willi...@gmail.com" <kevin.l.willi...@gmail.com> Nov 19 > 09:53AM -0800 > > That is such wonderful news about your husband. Thanks for your tip. > Fortunately I only had nausea when I took Gleevec on an empty stomach. > I am sure others will benefit from this suggestion. Make sure you tell > people to have the person taking Gleevec do the breaking and placing > into the gel caps. > > -Kevin Williams > dx 6/2000 > 140 mg Sprycel > > > > > Topic: Nausea and > exercise<http://groups.google.com/group/cmlhope/t/2c0bf017ee810bc9> > > Joan <lilak...@gmail.com> Nov 19 04:51AM -0800 > > I've been having mild nausea whenever I take my Gleevec (400 mg) for a > long time but it wasn't a big problem as long as I avoided citrus, > taking other pills at the same time or moving too fast afterward. > Recently I started taking YOGA in the evenings. Although I wait at > least half an hour and sometimes more afterwards to take my Gleevec, I > have been having trouble with more severe nausea and vomiting. I've > tried taking the Gleevec at other times but it seems like it > interferes even more with my life. I was diagnosed in 2004 and have > been very close to zero. Unfortunately, my last PCR indicated an > increase. My oncologist wants to up my dose but I talked him into > waiting a few months. Does anyone have any ideas on decreasing my > nausea? > > Joan > > > > > ANGELYN ESDERS <esd...@rogers.com> Nov 19 05:17AM -0800 > > At the beginning, in 2001, I felt nausea each time I took my 400mg of > Gleevec. I worked around it by getting up early enough to take half a > Bonamine (motion sickness pill). After it had time to get working, I would > eat a big bowl of oatmeal. Then I took the Gleevec. It seemed to me that > the > Gleevec was kinda buried in the oatmeal and didn't bother me so much. I > also > found that getting outside for a litle walk in the fresh air distracted me > from the nausea for long enough to let it pass. > Some people claim that taking a serving of protein for breakfast will > prevent nausea. > Watermelon has always helped me with nausea. > After some months I stopped ever having that problem. > Good luck! > Angie in Canada > > --- On Thu, 11/19/09, Joan <lilak...@gmail.com> wrote: > > > From: Joan <lilak...@gmail.com> > Subject: [CMLHope] Nausea and exercise > To: "CMLHope" <cmlhope@googlegroups.com> > Date: Thursday, November 19, 2009, 12:51 PM > > > I've been having mild nausea whenever I take my Gleevec (400 mg) for a > long time but it wasn't a big problem as long as I avoided citrus, > taking other pills at the same time or moving too fast afterward. > Recently I started taking YOGA in the evenings. Although I wait at > least half an hour and sometimes more afterwards to take my Gleevec, I > have been having trouble with more severe nausea and vomiting. I've > tried taking the Gleevec at other times but it seems like it > interferes even more with my life. I was diagnosed in 2004 and have > been very close to zero. Unfortunately, my last PCR indicated an > increase. My oncologist wants to up my dose but I talked him into > waiting a few months. Does anyone have any ideas on decreasing my > nausea? > > Joan > > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > > > > > Susan Armour <suzzienovem...@yahoo.com> Nov 19 08:06AM -0800 > > Hi Joan: You said avoiding citrus helps. You do know that we should > not eat grapefruit. Thats the one fruit that interferes with Gleevec. I > have been on Gleevec since 2000, and in the beginning I found that if I did > not eat a good meal before taking the Gleevec that I would get the nausea. > Never had vomiting, but felt close to it. Some people have found they do > better taking their Gleevec after dinner, as that is a bigger meal. Taking > a > increased dose could make the nausea worse, but you might need to do it to > get back on track. > You have to try different things that work for you. Hope you can > get your numbers back down again, and get some relief. > Suzzie > > --- On Thu, 11/19/09, Joan <lilak...@gmail.com> wrote: > > > From: Joan <lilak...@gmail.com> > Subject: [CMLHope] Nausea and exercise > To: "CMLHope" <cmlhope@googlegroups.com> > Date: Thursday, November 19, 2009, 7:51 AM > > > I've been having mild nausea whenever I take my Gleevec (400 mg) for a > long time but it wasn't a big problem as long as I avoided citrus, > taking other pills at the same time or moving too fast afterward. > Recently I started taking YOGA in the evenings. Although I wait at > least half an hour and sometimes more afterwards to take my Gleevec, I > have been having trouble with more severe nausea and vomiting. I've > tried taking the Gleevec at other times but it seems like it > interferes even more with my life. I was diagnosed in 2004 and have > been very close to zero. Unfortunately, my last PCR indicated an > increase. My oncologist wants to up my dose but I talked him into > waiting a few months. Does anyone have any ideas on decreasing my > nausea? > > Joan > > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > > > > > > > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
