Hi Joyce and so good to hear from you. Glad your hubby is good. I can't quit treatment either because my platelets and wbc go sky high. I am in Ponatinib. Been in MMR for a while now. As you know from my experience you never know when the leukies show their vicious selves. PRCP is much like an endoscopy where they run a tube down your throat and it shows your tummy area and etc but the PRCP goes further and looks at your bile ducts and pancreas ducts. At the same time they can take biopsies and clean out ducts if needed. It is a serious procedure and you need a very experience surgeon to do it. I will only do that as a last resort. On a better note the new chemo is working. Bad side effects at first. Hair falling out, skin so dry, eyes affected and side pain got worse. Yes I will miss my fats. I'm always looking for foods with fat instead of low fat. Hehe I'm taking digestive enzymes also. Going to Moffitt in the 29th. Let you know what happens. Blessings.
My Motto: Faith and Pills With Love ๐ 18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Sep 7, 2016, at 7:09 PM, Joyce Mesnarich <[email protected]> wrote: > > Jeanie, > Any restricted diet is a challenge; but if you are motivated it is very > possible. And I know you will be motivated. I think this may, in fact, be > the cause of your pain in the side. Seems almost unthinkable that it took > doctors this long to find your pancreas problem. My husband, Wayne, is still > on Bosulif since Sept 2015. Was on Sprycel before that but had problems with > pleural effusion. Was on vacation about 3 months. But in spite of the fact > that he had been in a deep MMR his PRC counts went up. Dr Talpaz was hoping > maybe he would be one of the lucky ones who could quit treatment. Not so. > He has again achieved MMR. What concerns me is that each test his counts go > up a bit. He is a 0.0321. Dr says not to worry. He is still in MMR. So I > will try to put it out of mind. > We learn so much from each other. Maybe you can enlighten me as to what a > ERCP is. > God bless and keep you. > Joyce in IL > > >> On Sep 6, 2016, at 1:48 PM, 'Jeanie' via CMLHope <[email protected]> >> wrote: >> >> Thanks Joyce, >> Yes a low fat diet is recommended for pancreatic problems. About 7 months >> into Ponatinib treatment the pain in my side became bad. One of the side >> effects is pancreatitis. They say it is caused by drinking and smoking and >> I don't do either so it has to be the tki. >> They say you can heal it with diet so I'll take that step but don't know >> what the doctor will say. See him the end of the month. >> He might want a ERCP. Don't know if I want that. >> Blessings to all. >> >> My Motto: >> Faith and Pills >> With Love >> ๐ 18's >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/2015 >> Doctor Balducci Moffitt Cancer Center >> >>> On Sep 6, 2016, at 2:24 PM, Joyce Mesnarich <[email protected]> wrote: >>> >>> Jeanie, >>> So sorry to hear of your pancreas problem. I guess we learn something new >>> every day. I never knew the pancreas had anything to do with fat. I >>> thought it handled sugar. Whatever, we have to do what the doctors tell >>> us. As time goes on, I fear that they will find out that most of the TKIs >>> have bad side effects when used for a longer amount of time. But we are >>> all thankful for the extra length of time they give CML warriors โon the >>> right side of the grassโ, as they say. I will keep you in my prayers. >>> Joyce in IL >>> >>> >>>> On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope >>>> <[email protected]> wrote: >>>> >>>> Me either. Think everyone is on vacation. >>>> I had my cat scan. Some bad news. My pancreas has atrophied. Got to cut >>>> down on fat. I wonder if that is what is causing my pain. I know >>>> Ponatinib causes pancreatitis. Dr never says anything about it. >>>> Everything else was the same except for a little fatty liver. >>>> Hope everyone is good. >>>> Still no Marty!!!! >>>> >>>> My Motto: >>>> Faith and Pills >>>> With Love >>>> ๐ 18's >>>> Dx 1/2004 CML Leukemia >>>> Started Gleevec 2/2004 >>>> Started Tasigna 9/2009 >>>> Started Sprycel 11/2009 >>>> Started Ponatinib 1/2015 >>>> Doctor Balducci Moffitt Cancer Center >>>> >>>>> On Sep 5, 2016, at 7:06 PM, 'LadyRx' via CMLHope >>>>> <[email protected]> wrote: >>>>> >>>>> I haven't received any notifications in my e-mail for the past 3 weeks or >>>>> so. Just checking to see if the group is still active. If so, please >>>>> leave a comment. >>>>> >>>>> Thank you! >>>>> >>>>> -- >>>>> -- >>>>> [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 >>>>> --- >>>>> 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 [email protected]. >>>>> 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 [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 >>>> --- >>>> 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 [email protected]. >>>> 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 [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 >>> --- >>> 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 [email protected]. >>> 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 [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 >> --- >> 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 [email protected]. >> 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 [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 > --- > 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 [email protected]. > 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. 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