Hi, yes I once had my platelet count in the millions, but that was a very long time ago when things were so much different from what they are now. I was started on both Hydrea and Allopurinol and it took about a month to get my platelets down, but so did my red and white counts come down as well. It was a balancing act that had me go through it all until I eventually had to have my spleen removed and then a bone marrow transplant. But remember that there were no TKI's at the time.
As far as long time Allopurinol goes, I am still on it after more then 25 years post transplant but it is a prophylaxis for the gout which I rarely get. When people are first diagnosed with CML they are usually started on both of these drugs however in today's time they may go directly to a TKI. Allopurinol helps your body get rid of Uric Acid which causes the gout. 18's, Marty On Tue, Jan 27, 2015 at 6:37 AM, ICANDOALLTTC via CMLHope < [email protected]> wrote: > Hi Joyce and all, > I took my second dose this morning--so far so good. > I was a little worried because my dr only ordered enough for 2 pills a day > and now he is telling me to take 3 pills a day. I don't know how the > reordering works as I have never had this drug before. > It seems I am in the accelerated phase of cml according to all the blood > test but my bone marrow proved to be in pretty good shape. > I feel better today than in a long time so let's see how it goes. > My dr also say to keep taking the allupurinal daily. > Didn't know this was a long termed drug. > Has anyone else had their platelets in the millions? > I wonder if something else could be causing it. > > Blessings And Prayers 18's Love > > > In a message dated 1/26/2015 9:32:46 P.M. Eastern Standard Time, > [email protected] writes: > > Jeanie, > Thanks for keeping us in the loop. Please continue to let us know how you > are tolerating ponatinib. I am praying for you that this drug will work > for you and not have unmanageable side effects. > God bless and keep you, > Joyce in IL > > > On Jan 26, 2015, at 1:00 PM, 'Icandoallttc' via CMLHope wrote: > > > Just took my first dose of ponatinib. He said to take 3--15 mg tablets > daily to see if it would bring the counts down. > > Do this for 3 days and see him on thurs. > > There is danger of heart problems--blood clots--stroke and ect--/ real > fun but what other choice do I have??? > > 1 baby aspirin daily and stay on the allopurinol daily. Hope every one > is good. Let us know. > > Prayers > > > > Blessings Jeanie 18's [image: 🐠][image: 🐠] > > > >> On Jan 26, 2015, at 1:54 PM, "'Icandoallttc' via CMLHope" < > [email protected]> wrote: > >> > >> Hi all, > >> > >> > >> Blessings Jeanie 18's [image: 🐠][image: 🐠] > >> > >> -- > >> -- > >> [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. > > Blessings And Prayers 18's Love > > -- > -- > [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.
