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 https://groups.google.com/d/optout. >>>>>> > >>>>>> > -- >>>>>> > -- >>>>>> > [CMLHope] >>>>>> > A 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