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 > <[email protected]> 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 <[email protected]> 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 <[email protected]> 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 >>>>> <[email protected]> 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 <[email protected]> >>>>> To: cmlhope <[email protected]> >>>>> 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 >>>>> <[email protected]> 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 <[email protected]> >>>>>> To: cmlhope <[email protected]> >>>>>> 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, >>>>>> [email protected] 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 <[email protected]> >>>>>> To: cmlhope <[email protected]> >>>>>> 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, >>>>>> [email protected] 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 <[email protected]> >>>>>> To: cmlhope <[email protected]> >>>>>> 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, >>>>>> [email protected] 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" >>>>>> <[email protected]> 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, >>>>>>> [email protected] 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 >>>>>>> > <[email protected]> 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 <[email protected]> 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 [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 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