Hi Marty Yes a fl cracker--hope you are great today!!! I am going to have an endoscopy thur. First one--they put you to sleep. Blessings Jeanie
Sent from my iPhone > On Jan 19, 2015, at 7:55 PM, Marty Gartenberg <[email protected]> wrote: > > 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 >> <[email protected]> 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, >> [email protected] 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 >>> <[email protected]> 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, >>> [email protected] 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 >>>> <[email protected]> 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, >>>> [email protected] 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 <[email protected]> >>>>> 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, [email protected] 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, >>>>>> [email protected] 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 [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. >>>>>> -- >>>>>> -- >>>>>> 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