Thanks John. I need and enjoy your feedback. Maybe it was the allopurinol and not the Gleevec. I had a bad rash on Gleevec. I cut down on the allopurinol and I think the rash is better. Started light sweating --haven't had that for years. Maybe a good sign it's working. Have a Scotch on me!!
Prayers & Blessings Jeanie 18's 🐠🐠 > On Feb 8, 2015, at 5:50 PM, John Barrons <jl...@rogers.com> wrote: > > 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 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------------------------------------------------- >>>>>>> >>>>>>> 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. >> -- >> -- >> [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.
