Hi Marty For some reason even with all these high counts, my spleen hasn't been affected. My doctor wants a cat scan once a year to check. You sure went through a lot warrior!!! I am supposed to get one the 12th if Feb but I have to see if I can drink all that liquid they want you to down. Hang in there!!!
Prayers & Blessings Jeanie 18's 🐠🐠 > On Jan 27, 2015, at 10:06 AM, Marty Gartenberg <[email protected]> wrote: > > 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 <emoji_u1f420.png><emoji_u1f420.png> >> >>> 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 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>>> 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 > ------------------------------------------------- > > 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