Thanks John. I am surprised that I have not seen anything about that drug before. Been researching in this CML department since 2008. Joyce in IL
On Jun 9, 2015, at 10:32 PM, John Barrons wrote: > Hi Joyce: if you go to drugs.com and type in name omacetaxine is well > explained. It requires an injection twice a day, which I did. I was on it > about two years. I have been 100% Phillies until I started ponatinib and this > drug reduced my phone Phillies to about 50%. I am very sensitive to ponatinib > as it is a strong medication. There are some issues with side effects with > the heart. Right now I am off the drug for a three week period and will > probably go on one pill a week when get a cbc. My counts are WB 3.5, > platelets 17 and red blood 116. I am sorry your husband is involved with > this but at least the drugs are pretty good. I have had cml for 15 and one > half years. > Cheers John B > > Sent from my iPad > > On Jun 9, 2015, at 11:00 PM, Joyce Mesnarich <joy...@htc.net> wrote: > >> John, >> When you were on sprycel did you get to PCRU? My husband was on sprycel for >> 3 years and then, just as you, had to go off because of pleural effusion. >> He was undetectable for 2 years and lost his PCRU in 2 months. He is now on >> bosulif.....first 100 mg which was not working.....then on 200 mg which he >> will find out in July if it is doing anything good. >> I am not familiar with omacetaxine. Can you enlighten us on what it is and >> what it is for? >> Wish you well on ponatinib. >> Joyce in IL >> >> >> On Jun 9, 2015, at 6:31 AM, John Barrons wrote: >> >>> Hi Choi I was on sprycel and to go off it because of pleural effusion. I >>> then went on omacetaxine for a couple of years and finally am on ponatinib. >>> I only take normally one pill a week it is a strong drug so I am off it for >>> three weeks. John B >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> Sent from my iPad >>> >>> On Jun 9, 2015, at 6:47 AM, Choi <saehyun...@naver.com> wrote: >>> >>>> Hi, this is Choi from South Korea. One of my CML friends had some problems >>>> and I just wonder who had a similar experience. >>>> >>>> He was diagnosed with CML chronic phase on july 2012 and started Gleevec >>>> 400mg for 16 months and switched to Sprycel due to E355G mutation. >>>> At that time his PCR was 1.89. He started Sprycel and E355G mutaiton was >>>> disappered. He was on Sprycel for 12 months. >>>> He developed pleural effusions after 12 months of Sprycel at that time his >>>> dose was 100mg. His doctor stopped Sprycel for 2 weeks and restarted >>>> Sprycel 80mg for 3 months. >>>> Once again he developed pleural effusions so he was off Sprycel for 4 >>>> weeks and restarted Sprycel 60mg until now and still had minor pleural >>>> effusions. >>>> PCR count was 0.37, 0.47, 0.45 and never drop to under 0.1% so his doctor >>>> was considering to switch to other drugs but hesitated to switch because >>>> of he had E355G mutation. >>>> Is there any one who had a similar experience? >>>> >>>> Choi. >>>> >>>> -- >>>> -- >>>> [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 >>>> --- >>>> You received this message because you are subscribed to the Google Groups >>>> "CMLHope" group. >>>> To unsubscribe from this group and stop receiving emails from it, send an >>>> email to cmlhope+unsubscr...@googlegroups.com. >>>> For more options, visit https://groups.google.com/d/optout. >>> >>> >>> -- >>> -- >>> [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 >>> --- >>> You received this message because you are subscribed to the Google Groups >>> "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send an >>> email to cmlhope+unsubscr...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >> >> >> -- >> -- >> [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 >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. > > > -- > -- > [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 > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to cmlhope+unsubscr...@googlegroups.com. > For more options, visit https://groups.google.com/d/optout. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.