Hi Jeanie, You sound like a real southern gal. As for me, I'm just a good old plain city boy that also loves to go fishing. When I was a kid my father would take me out deep sea fishing and my favorite fish was blue fish. My mother used to cook it in milk to get rid of the fishy taste. It was really good but I can't seem to find blue fish here in Florida.
Anyway, I am kind of surprised to hear that your having a difficult time with Hydrea. That was the first drug that I got along with Allopurinal when I first had CML. Both of those drugs never gave me any problems except if I took too much and it would take about a week for them to start working. Once they did then my blood counts would drop sometimes drastically so the doses had to be adjusted, but I never got sick or anything like that from them. Good luck, 18's, Marty On Mon, Jan 19, 2015 at 8:59 AM, ICANDOALLTTC via CMLHope < cmlhope@googlegroups.com> wrote: > Hi all, > My family all love to fish, and we keep and eat everything legalhehe. > I was reared on good fried to a golden brown perch that live in the Fl > lakes and rivers. > There is nothing better than good fried mullet with their roe fried to t > golden brown. > We love it with grits and tomato gravy and cornbread. > I am feeling some better, but taking Hydrea is no fun at all. Knocks you > for a loop. > I haven't heard about the pontatinib yet. > My doctor says its a powerful drug and has to be kept monitored every week. > Well all the drugs are powerful as far as I am concerned. > Good luck everyone, > Jeanie<3 > > > In a message dated 1/15/2015 2:58:00 P.M. Eastern Standard Time, > wa2...@gmail.com writes: > > Hi again Greenie, > > Like you said, don't look back but only forward. > > By the way, I am an animal lover whether it be dogs, cats, birds or fish. > > I am glad to hear that you threw back those fish where they belong. > > 18's, > > Marty > > On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Marty, My aunt left me some stock and money and one of the stocks was >> Novartis and my stock guy told me to sell it. That was before Gleevec was >> in any kind of study. Because of him I also lost $43,000.00 and I pulled >> my money out and fired him. If I, would have, could of. Of course I wish I >> would have kept some of my early Corvette's that I had I would be worth a >> more money then Novartis. But can't look back, just look forward. >> >> Thanks for your reply, also I live in South Fort Myers not far from the >> beach. In fact I went fishing yesterday by the beach and caught 8 fish. >> But I do not keep any, back into the water they go where they belong. >> >> greenie >> >> >> >> In a message dated 1/15/2015 1:09:00 P.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> >> Hi Greenie, >> >> First, where in Florida do you live? I am on the east coast, Boynton >> Beach. If we are not to far maybe we can do lunch one of these days. If my >> memory serves me right I think that you may be in Ft Meyers??? If so then I >> guess that lunch is out of the question... >> >> About STI571. Do you know how it came about? As everyone already knows >> Dr. Brian Druker who was the one that had first discovered it. He tried >> finding a drug company that would produce it and finally found Novartis >> which was at the time an agricultural drug company. >> >> One of Dr. Drukers patients was Zavie Miller who was trying out STI571 >> and it was working. Novartis didn't want to produce it in quantity because >> of the start up costs. Both Zavie and I got in touch with one of the >> principals of Novartis and told him that we may be able to bring a lot of >> investors into the company. >> >> At the time there was another CML site and we got on and asked if people >> would like to invest in the Novartis stock. At that time their stock price >> was $1,200 a share but there were also what is called American registry >> shares of Novartis that was selling for only $20.00 a share. >> >> Everyone started buying those shares and Novartis then started production >> but only after it was approved by the FDA which normally takes about 10 >> years. With pressure being put on the FDA STI571 was approved in about one >> and a half years, and became Gleevec. >> >> I bought many shares of Gleevec at $20.00 a share and have nor will I >> ever sell them because of my support for Novartis. As of my December stock >> portfolio Novartis is listed at 92.6600. Novartis stock has continuously >> gone up and up over the years. >> >> I am however disappointed in the price they are getting, most notably >> there are people with CML that can not afford it. Now Novartis does have >> some options for those that are having a difficult time but it still would >> be nice if Novartis would look back at what they were and what they are >> now, and maybe consider dropping their price for Gleevec. Wishful thinking? >> Maybe but maybe not, hopefully... >> >> But Greenie, as you mentioned it is all about greed and money. >> >> 18's, >> >> Marty >> >> On Thu, Jan 15, 2015 at 9:32 AM, Myvety2k via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> Thank you Marty, Everything you wrote is so true about Gleevec and >>> CML. It's unfortunate that greed and money has to be in the equations in >>> the final outcome. After Interferon that almost killed me all that was >>> left was Hydrea. So when Doctor Tallman called me and wanted be in his >>> study for STI571 I had no idea what was going on. Within 3 months I was >>> 85% clean and after 6 months I was clean. Yes their have been over the >>> years some up's and down's put that's part of life. Like my late Aunt used >>> to always say when she was in her 80's I just take one day at a time. >>> >>> I wound like to see a cure in my life time because the old hour glass is >>> starting to run low on sand.. And the way these people drive here in >>> Florida the end could come anytime I leave the friendly confines and that's >>> not any guarantee because most of the people speed and run the stop signs >>> in this 55 and older community. >>> >>> Keep in touch, >>> >>> Greenie >>> >>> In a message dated 1/15/2015 8:11:39 A.M. Eastern Standard Time, >>> wa2...@gmail.com writes: >>> >>> >>> Hi Greenie, >>> >>> So you have been on Gleevec for 15 years. That is something good to know >>> because what would you have done without Gleevec? This drug is responsible >>> for saving countless lives. Thank GOD it is here or you wouldn't be here >>> right now. >>> >>> If it weren't for dialysis neither would I be here right now. This is >>> the advancement of what medicine has on our lives today. I always say that >>> there will be a cure for CML and you can mark my words it WILL come soon. >>> Just like all of the things that were not around years ago now they are >>> coming. >>> >>> GOD bless you Greenie! >>> >>> 18's, >>> >>> Marty >>> >>> On Thu, Jan 15, 2015 at 5:47 AM, Shannon L <shannonl.cam...@gmail.com> >>> wrote: >>> >>>> Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly >>>> 3 yrs after dx) >>>> Shannon >>>> >>>> On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote: >>>>> >>>>> Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. >>>>> Starting to retain fluid around my ankles a little but that could be and >>>>> age thing. 75 years old. >>>>> >>>>> greenie >>>>> >>>>> In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time, >>>>> cml...@googlegroups.com writes: >>>>> >>>>> Hi Richard and thanks for the update. My onc doesn't like for me to >>>>> be informed either; he just ignores what I say and goes on to tell me what >>>>> he thinks. >>>>> My uric acid was high along with my WBC and Platelets. He seemed to >>>>> be more concerned with the high uric acid--even called me on my cell >>>>> personally twice; never had that happen before. >>>>> He took me off Sprycel adn put me on Hydrea and allopurinol; it's >>>>> funny the same thing they did 11 years ago when I was first dx. >>>>> He took another blood sample to see if I have a mutation against the >>>>> Sprycel. It seems strange that I had a mutation with Gleevec after 5 >>>>> years. Is five years a cut off point? Has anyone else have this happen? >>>>> Anyone else been on Hydrea after tki? >>>>> Going next week to Moffitt to see if I have the mutation. Will let >>>>> everyone know. >>>>> The leukemia has reared it's ugly head once again!! >>>>> Pray for me and everyone in need. >>>>> Blessings >>>>> Jeanie >>>>> (18) >>>>> >>>>> >>>>> In a message dated 1/8/2015 11:59:08 P.M. Eastern Standard Time, >>>>> rbhuf...@gmail.com writes: >>>>> >>>>> WOW! Just read todays posts. I am praying for the group. I will >>>>> add my problem to the list. Dec. 30 I contacted ONC about gaining 9.5 >>>>> pounds water weight in 20 days after restarting Gleevec. His nurse called >>>>> that he was out of the country on vacation with his family. She checked >>>>> with the DR. covering for him and he asked me to stop Gleevec as he >>>>> thought >>>>> I was gaining weight too fast also. My ONC did return to the office on >>>>> Monday but finally had a conference with his Associate and he agreed with >>>>> that decision. They both thought that I should be on a different >>>>> treatment. My ONC was to draft an e-mail to the VA ONC (the one >>>>> controlling my prescriptions) about my reaction to Gleevec and to >>>>> recommend >>>>> the treatment he thinks I should be on. So I am still in a wait and see >>>>> stage. My ONC tells me I am too informed about my condition and that >>>>> challenges most blood cancer specialists that rarely see CML. >>>>> So let the fun and games continue. I am still feeling great, but the >>>>> "Gleevec Brain" was also starting to show itself, but nine days off has >>>>> cleared it. I'm as sharp as a busted tack, but that is "normal" for me. >>>>> >>>>> As always, "life" and may your tomorrow be beautiful and better than >>>>> today. >>>>> >>>>> Richard H. >>>>> >>>>> -- >>>>> -- >>>>> [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 cml...@googlegroups.com >>>>> To unsubscribe from this group, send email to CMLHope-u...@ >>>>> 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+u...@googlegroups.com. >>>>> For more options, visit https://groups.google.com/d/optout. >>>>> >>>>> -- >>>>> -- 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