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 support group of http://cmlhope.com >> > ------------------------------------------------- >> > >> > You 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