Thanks Marty I have not heard of many with platelets in the millions. The doctor lowered my hydrea and I think that was the problem. Yes hit and miss and guessing game. I didn't know you had your spleen removed. He is always checking mine. How much Allopurinol do you take daily? I'm glad John of Toronto checked in--hoping and praying for your kidney daily.
Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 27, 2015, at 8:20 AM, Marty Gartenberg <[email protected]> wrote: > > 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 <emoji_u1f420.png><emoji_u1f420.png> >> > >> >> On Jan 26, 2015, at 1:54 PM, "'Icandoallttc' via CMLHope" >> >> <[email protected]> wrote: >> >> >> >> Hi all, >> >> >> >> >> >> Blessings Jeanie 18's <emoji_u1f420.png><emoji_u1f420.png> >> >> >> >> -- >> >> -- >> >> [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. -- -- [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.
