Hi Jeanie, I had to have my spleen removed because it was so enlarged and it kept on aching. The doctors usually check your spleen when you have CML but you will know yourself if it starts becoming enlarged and especially aching. However once your on a TKI it shouldn't become enlarged. The spleen is the organ that stores an overabundance of white blood cells, and since those TKI's keep your white cells in check then it shouldn't effect your spleen.
To answer your question, I take 100 mg of Allopurinol daily. Been doing this for more then 25 years but I was first started out on 300 mg daily. Since I don't have CML (THANK GOD) anymore (PCRU) I take it as a prophylaxis for not having the Gout. When someone has CML they have a lot of uric acid in their body. That is usually the reason they are put on Allopurinol. 18's, Marty On Tue, Jan 27, 2015 at 8:54 AM, 'Icandoallttc' via CMLHope < [email protected]> wrote: > 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 [image: 🐠][image: 🐠] > > 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. > -- -- [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.
