Hi Jeanie: At the time I started allopurinol, I did not have a rash from what I was on, although I can't remember what I was on. It was a while ago. The rash occurred, it seems to me, soon after I started allipurinol. When I came off it and went on colchicine the rash went away. No problems with it since. Going on ponatinib was necessary as omacetaxine was a problem. I learned of the problem with ponatinib on the Internet when the trials in the US were cancelled. I mentioned it to my onc and he said that, don't quote me, that there was a problem. Initially, I was on 45mg per day but the amount was reduced very quickly. As I mentioned, I have been on it over two years now and I haven't had any heart problems so far. Interestingly enough, a heart study has been started at the Toronto General Hospital for patients of my onc and perhaps others. I think it has something to do with patients who are on TKI's. I had my ECG, blood test and Echo gram done last Thursday. So I'll be interested to hear the results. Regards Joh R
Sent from my iPad > On Feb 8, 2015, at 3:34 PM, 'Icandoallttc' via CMLHope > <cmlhope@googlegroups.com> wrote: > > Just a few questions John. How did your onc come to the conclusion that it > was the allopurinol when the tkis can cause rash? Did they warn you and > stress the dangers of ponatinib causing blood clots-heart attacks--high blood > pressure and other life threatening conditions? My onc keeps warning me > about all these things. He is really worried about my blood pressure. My > blood pressure goes up when I go to any doctor. > Thanks do much for helping me in my journey with ponatinib. > > Prayers & Blessings Jeanie 18's 🐠🐠 > >> On Feb 8, 2015, at 12:35 PM, Icandoallttc <icandoall...@aol.com> wrote: >> >> Hehe >> Thanks for that John. >> That could be causing the rash. >> I will ask my onc about it. I've never had gout but they say it is to wash >> out all dead cells being dumped into your system so you won't get gout. >> Have a good day. >> >> Prayers & Blessings Jeanie 18's 🐠🐠 >> >>> On Feb 8, 2015, at 11:14 AM, John Barrons <jl...@rogers.com> wrote: >>> >>> Hi Jeanie: I did have rash when I was put on Allipurinol for uric acid >>> reduction. I think it was over a lot of my body. I was then put on >>> colchicine and have been on it quite a while. It have have no side effects >>> from it. The uric acid has changed my feet as they have become a little >>> larger and I had to get other shoes. I have in the past had severe pain in >>> my toes from gout from time to time. I haven't had bad pain for quite a >>> while, but I do get zingers from time to time. I try to watch my diet like >>> very little red wine and red meat. Mostly Scotch and water. I know...... >>> Too much info John >>> >>> Sent from my iPad >>> >>>> On Feb 8, 2015, at 10:21 AM, 'Icandoallttc' via CMLHope >>>> <cmlhope@googlegroups.com> wrote: >>>> >>>> I forgot to say that I have developed a rash on upper part of both >>>> legs--not itching or ect--John did you have a rash? >>>> >>>> Prayers & Blessings Jeanie 18's 🐠🐠 >>>> >>>>> On Feb 8, 2015, at 9:13 AM, Icandoallttc <icandoall...@aol.com> wrote: >>>>> >>>>> Hi Joyce >>>>> So good to hear from you. This is me 13th day on ponatinib. I can't >>>>> say I'm feeling better but am not worse. No bad side effects as of yet. >>>>> My platelets are slow coming down. Yes time and patience is needed now. >>>>> This is the third time I have been in crisis so I'm praying this medicine >>>>> will put me back into remission. Thanks for the uplift. >>>>> >>>>> Prayers & Blessings Jeanie 18's 🐠🐠 >>>>> >>>>>> On Feb 7, 2015, at 7:17 PM, Joyce Mesnarich <joy...@htc.net> wrote: >>>>>> >>>>>> Jeanie, >>>>>> Glad to hear that platelets are on the way down! Just takes a bit more >>>>>> patience and prayers. Are you feeling better? I know you just started >>>>>> ponatinib. >>>>>> God bless and keep you, >>>>>> Joyce in IL >>>>>> >>>>>> >>>>>> >>>>>>> On Feb 6, 2015, at 9:03 AM, 'Icandoallttc' via CMLHope wrote: >>>>>>> >>>>>>> Good morning everyone >>>>>>> My blood results are in and my platelets came down a little--1050 >>>>>>> million--WBC still at 14--still fighting. >>>>>>> >>>>>>> Prayers & Blessings Jeanie 18's 🐠🐠 >>>>>>> >>>>>>>> On Feb 4, 2015, at 4:35 PM, bkbarney via CMLHope >>>>>>>> <cmlhope@googlegroups.com> wrote: >>>>>>>> >>>>>>>> >>>>>>>> Good you have a few options to work with...Hopefully this one will >>>>>>>> work for you in a bit of time. I am championing your warrior spirit!! >>>>>>>> >>>>>>>> Take care, >>>>>>>> 18's Beth >>>>>>>> >>>>>>>> -----Original Message----- >>>>>>>> From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> >>>>>>>> To: cmlhope <cmlhope@googlegroups.com> >>>>>>>> Sent: Wed, Feb 4, 2015 7:07 am >>>>>>>> Subject: Re: [CMLHope] Ponatinib >>>>>>>> >>>>>>>> 11 years for me--still fighting !!! 9th day on ponatinib. Sure hope >>>>>>>> it starts working. My onc says it's my last choice but there is one >>>>>>>> more tki I haven't tried--bositinib--not sure if spelling. >>>>>>>> Thanks for the uplift. >>>>>>>> >>>>>>>> Prayers & Blessings Jeanie 18's >>>>>>>> >>>>>>>> On Feb 4, 2015, at 12:56 AM, bkbarney via CMLHope >>>>>>>> <cmlhope@googlegroups.com> wrote: >>>>>>>> >>>>>>>>> Thanks Greenie. You too are my inspiration.Fifteen years!!! God >>>>>>>>> bless Dr. Druker! Five years for me February 12th. I was diagnosed at >>>>>>>>> 48. >>>>>>>>> >>>>>>>>> Take good care and enjoy the warmth! Beth >>>>>>>>> >>>>>>>>> >>>>>>>>> -----Original Message----- >>>>>>>>> From: Myvety2k via CMLHope <cmlhope@googlegroups.com> >>>>>>>>> To: cmlhope <cmlhope@googlegroups.com> >>>>>>>>> Sent: Tue, Feb 3, 2015 8:31 pm >>>>>>>>> Subject: Re: [CMLHope] Ponatinib >>>>>>>>> >>>>>>>>> Beth, get out the heating pad make sure it's a big one they make >>>>>>>>> different sizes. I go fishing under the bridge going over to Sanibel >>>>>>>>> sometimes. If you do come down here we will get together that's for >>>>>>>>> sure. Just get better. My son Derek's wife Ruby, she has a massage >>>>>>>>> and yoga wellness studio 118 North Clinton St., Suite 102 in Chicago. >>>>>>>>> It's called Massage Evolved. website (massageevolved.com). They >>>>>>>>> started a little over a year ago and seem to be doing very good. He >>>>>>>>> called me over the weekend and told me about the snow. You miss >>>>>>>>> Florida and I'm sorry I don't miss North West Indiana because of that >>>>>>>>> weather. Summer is just to short up their, Grace and my bones can't >>>>>>>>> take it. Plus getting sick with a cold. But Grace want's so >>>>>>>>> purchase a small house or condo up their for the summer so we would >>>>>>>>> miss the real hot months down here. It would only be for 4 to 5 >>>>>>>>> months. That way we could visit with our grand kids and our kids. >>>>>>>>> >>>>>>>>> I can remember when I first found out that I had CML, it was to weeks >>>>>>>>> before xmas 1998. I asked the doctor at that time how much time I >>>>>>>>> had and she said between 1 1/2 to 2 years. She put me on hydra then >>>>>>>>> she sent me to Northwestern to see doctor Tallman and he put me in a >>>>>>>>> study with interferon which almost killed me it was that bad. They >>>>>>>>> stopped it after 3 months because I told him I couldn't take be that >>>>>>>>> sick anymore. So they stopped the study early..I wanted to die, a >>>>>>>>> short time he called me to put me in another study called STI571. >>>>>>>>> Their was only 8 of us and I was the only one from Indiana plus the >>>>>>>>> oldest of the 7. The study had 200 people from the US and this was >>>>>>>>> the only country using STI571. And here I am after 15 years still >>>>>>>>> driving everyone crazy. It's funny how things turn out, I call it >>>>>>>>> faith. >>>>>>>>> >>>>>>>>> You just got to hang in their things will get better it won't happen >>>>>>>>> over night. >>>>>>>>> >>>>>>>>> greenie >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> >>>>>>>>> In a message dated 2/3/2015 6:03:14 P.M. Eastern Standard Time, >>>>>>>>> cmlhope@googlegroups.com writes: >>>>>>>>> >>>>>>>>> Greenie, >>>>>>>>> >>>>>>>>> It's snowing again here in Chicago land..hopefully only a couple of >>>>>>>>> inches..to add to the 20 plus already on the ground. I have been down >>>>>>>>> with a bad cold this week...but I watched my neighbors son--- 23 year >>>>>>>>> old..trying to dig out people- including me! .snow drifts were >>>>>>>>> waist high! It's crazy...and now..it also got very cold...below zero >>>>>>>>> wind chills last night..so lots of ice...ah winter.... >>>>>>>>> >>>>>>>>> I was dreaming last night about the causeway between Fort Myers and >>>>>>>>> Sanibel...watching the Osprey soar, seeing dolphin in the water...the >>>>>>>>> pelicans sitting on wood stumps along the water...snowy egrets..and >>>>>>>>> then I woke up!!! Must get back there soon one day...maybe at the >>>>>>>>> end of this year...hope to meet you when I do. >>>>>>>>> >>>>>>>>> Will look to hear from you about your test results tomorrow. >>>>>>>>> >>>>>>>>> Take care, Beth >>>>>>>>> >>>>>>>>> -----Original Message----- >>>>>>>>> From: Myvety2k via CMLHope <cmlhope@googlegroups.com> >>>>>>>>> To: cmlhope <cmlhope@googlegroups.com> >>>>>>>>> Sent: Tue, Feb 3, 2015 5:57 am >>>>>>>>> Subject: Re: [CMLHope] Ponatinib >>>>>>>>> >>>>>>>>> Hi Beth, I received a call from my son Derek about the snow he lives >>>>>>>>> in North Chicago. I hope I never have to move back north, can't >>>>>>>>> handle the cold and snow. >>>>>>>>> >>>>>>>>> greenie >>>>>>>>> >>>>>>>>> In a message dated 2/2/2015 10:42:17 P.M. Eastern Standard Time, >>>>>>>>> cmlhope@googlegroups.com writes: >>>>>>>>> Dear Skip and Jeanie, Thinking of you both as you navigate new >>>>>>>>> terrains. Hope the ponatinib works soon Jeanie and sorry you are >>>>>>>>> struggling Skip. Do let us know if you what you decide regarding >>>>>>>>> ponatinib. I think about it also. ... >>>>>>>>> >>>>>>>>> Greenie, hope you and your wife are feeling much better. >>>>>>>>> >>>>>>>>> Snow here in Chicago. 21 inches, drifts up to my waist when I opened >>>>>>>>> my front door this morning. Now work today..have a cold so it was a >>>>>>>>> good day to bunker down here. >>>>>>>>> >>>>>>>>> Blessings and love to all. Beth >>>>>>>>> >>>>>>>>> >>>>>>>>> -----Original Message----- >>>>>>>>> From: Myvety2k via CMLHope <cmlhope@googlegroups.com> >>>>>>>>> To: cmlhope <cmlhope@googlegroups.com> >>>>>>>>> Sent: Mon, Feb 2, 2015 3:45 pm >>>>>>>>> Subject: Re: [CMLHope] Ponatinib >>>>>>>>> >>>>>>>>> Jeanie, it's a good thing we don't get snow or ice here in Florida >>>>>>>>> because the way these people drive here the insurances companies >>>>>>>>> would go out of business in one day. They can't drive here when the >>>>>>>>> roads are dry. >>>>>>>>> >>>>>>>>> greenie >>>>>>>>> >>>>>>>>> In a message dated 2/2/2015 4:11:00 P.M. Eastern Standard Time, >>>>>>>>> cmlhope@googlegroups.com writes: >>>>>>>>> Thanks Skip-I've never had blood counts that low--always battling >>>>>>>>> high ones. >>>>>>>>> Wow! That storm sounds neat! >>>>>>>>> We never get sleet and snow in Florida. I saw a sleet and snow >>>>>>>>> storm in my visit to Switzerland. My kids loved it and were playing >>>>>>>>> in it. I wasn't that brave--I went inside hehe. >>>>>>>>> I hope you get your platelets soon. >>>>>>>>> >>>>>>>>> Prayers & Blessings Jeanie 18's >>>>>>>>> >>>>>>>>> On Feb 2, 2015, at 2:30 PM, "'Skip Duffie' via CMLHope" >>>>>>>>> <cmlhope@googlegroups.com> wrote: >>>>>>>>> >>>>>>>>>> I am so sorry you counts vary so much mine have been doing that now >>>>>>>>>> for a few years, Fri my HGB was 79.. my wbc was 1.5, .. plts was 17 >>>>>>>>>> .. neut 0.3... ANC 0.279 normally I would get somePLTS tomorrow but >>>>>>>>>> we have another big storm going to hit tonight and will have >>>>>>>>>> freezing rain in morning and all the snow will turn to ice.. so we >>>>>>>>>> will hold off until Wed. I am sorry for not posting much but I find >>>>>>>>>> using the computer very makes me very tired lately. still thinking >>>>>>>>>> about Ponatinib, this is my fourth year without anything except >>>>>>>>>> blood and platelet infusions >>>>>>>>>> Skip Duffie >>>>>>>>>> >>>>>>>>>> >>>>>>>>>> My brother lives in Naples, I live in South Fort Myers min. from the >>>>>>>>>> beach. The weather will be Mon. 78, Tues 72, Wed 73, Thur 72, Fri >>>>>>>>>> 69 and Sat 68. Below normal should be in the low 80's BUT better >>>>>>>>>> then SNOW> >>>>>>>>>> >>>>>>>>>> Greenie >>>>>>>>>> >>>>>>>>>> In a message dated 1/31/2015 11:39:12 P.M. Eastern Standard Time, >>>>>>>>>> jl...@rogers.com writes: >>>>>>>>>> Hi I am OK I had my counts done last Wednesday and my platelets were >>>>>>>>>> 35 and white blood cells 2.8 and neutrofils were 1.5. Hemoglobin >>>>>>>>>> 135. I am still off the drug and have another check this coming >>>>>>>>>> Wednesday. I will go back on the drug then and probably at 2 or >>>>>>>>>> three a week. My wife and I will be coming to Naples Florida to >>>>>>>>>> visit friends for a week or so. I hope it will be warm. Have your >>>>>>>>>> counts come down ? >>>>>>>>>> >>>>>>>>>> Sent from my iPad >>>>>>>>>> >>>>>>>>>> > On Jan 31, 2015, at 3:04 PM, 'Icandoallttc' via CMLHope >>>>>>>>>> > <cmlhope@googlegroups.com> wrote: >>>>>>>>>> > >>>>>>>>>> > Hi John >>>>>>>>>> > I go to Moffitt cancer center. How are you? >>>>>>>>>> > >>>>>>>>>> > Prayers & Blessings Jeanie 18's >>>>>>>>>> > >>>>>>>>>> >> On Jan 31, 2015, at 10:47 AM, John Barrons <jl...@rogers.com> >>>>>>>>>> >> wrote: >>>>>>>>>> >> >>>>>>>>>> >> Hi Jeanie: Where are getting treated? John >>>>>>>>>> >> >>>>>>>>>> >> Sent from my iPad >>>>>>>>>> >> >>>>>>>>>> >> -- >>>>>>>>>> >> -- >>>>>>>>>> >> [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 CMLHope@googlegroups.com >>>>>>>>>> >> To unsubscribe from this group, send email to >>>>>>>>>> >> cmlhope-unsubscr...@googlegroups.com >>>>>>>>>> >> 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 cmlhope+unsubscr...@googlegroups.com. >>>>>>>>>> >> For more options, visit 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group and stop receiving emails from it, send an >>>> email to cmlhope+unsubscr...@googlegroups.com. >>>> 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 CMLHope@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-unsubscr...@googlegroups.com >>> 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 cmlhope+unsubscr...@googlegroups.com. >>> 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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
