Dear Jeanie,
I too was stunned that you have been in so much pain for so long and that the
pancreatitis was not found sooner. Eating fats definitely triggers it and makes
it worse. The good news is with proper meds, and a diet to calm it down, you
very well may have that pain go away forever.. That would be wonderful!! I
don't know a thing about a pancreatitis that has gone on for so long without
diagnosis or treatment..but I hope and pray that you feel much better very very
soon.
Joyce, and ERCP is a test where they put you under twilight meds, like a
colonoscopy, and take a small tube with a camera on the end of it and go down
your throat into your tummy etc to have a look....they sometimes will take a
small biopsy to assess the cells in the area...look for inflammation or
infection, etc...it doesn't hurt.. may have a tiny sore throat for a day
afterwards...but that's about it...painless. worth a look Jeannie- it also can
help to rule in or out other possible causes of pain.
Beth
-----Original Message-----
From: Joyce Mesnarich <joy...@htc.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Wed, Sep 7, 2016 6:09 pm
Subject: Re: [CMLHope] Haven't gotten any e-mail notifications
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 <cmlhope@googlegroups.com>
> 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
> 🐠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 <joy...@htc.net> 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 “on the right
>> side of the grass”, as they say. I will keep you in my prayers.
>> Joyce in IL
>>
>>
>>> On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
>>> 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
>>> 🐠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
>>>> <cmlhope@googlegroups.com> 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!
>>>>
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