Jeanie, Are you a depression head? I think that you need to add something
to your motto. But before I say it. You need to turn your head around and
look strait and just think about this... They are your own words and tell
me what you see...
Yes my onc reduced my Ponatinib >>AS SOON AS MY NUMBERS GOT GOOD<<    I
SHALL LIVE AND BE HAPPY 18'S

Marty

On Thu, Aug 23, 2018 at 8:47 AM 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Hi perk
> Yes my onc reduced my Ponatinib as soon as my numbers got good.
> It’s so hard to know what to do.  We are scared to take mds but know we
> will die if we don’t.
> Good luck with all.
>
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> 🐠free
> 18’s to Marty
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired
> Dr Gedia PCD
> 0 CBL. ABL
> Taking 0.05mg 50 mcg levothyroxine
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
>
> On Jul 30, 2018, at 2:24 PM, perk <perkuss...@msn.com> wrote:
>
> I had the same problem with Sprycel. I went into the hospital thinking
> they were going to drain the fluid around my lungs. They took me off of
> Sprycel and on Tasigna. They also gave me Lasix to assist in removing the
> fluid. They cautioned that I may experience the same problem with Tasigna.
> I started taking it every other day instead of everyday and so far, my
> numbers have been good. I feel a little tightness in my chest sometimes but
> I seem to do better by not taking it everyday. Why did they increase your
> dosage? I think they prescribe too much sometimes and you should listen to
> your own body. This may not be good advice but it has worked for me.
>
> Good luck
>
> Perk in Texas
>
> On Saturday, July 28, 2018 at 8:26:52 AM UTC-5, Ragavan wrote:
>>
>> I was taking 50mg Dasatinib per day. An year back it was increased to
>> 75mg. For the last few months breathing difficulty is keep increasing. I am
>> not able to take full breath. It is always half breath. I will discuss with
>> my doctor in the coming visit.
>>
>> Did anybody else face the same problem? How did you handle? Please help.
>>
>> thanks,
>> Ragavan
>>
>>
>> --
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