Hi Jeanie, You know that I'm praying for you. I know that everything will come out alright.
GOD bless you Jeanie. 18's, Marty PS could you also pray for me to receive a kidney transplant soon. I need to have another operation on the fistula in my arm once again. This will be the twelfth operation in less then a year, but I have to get it done because it is my life line until I can get a kidney transplant.. On Thu, Jan 22, 2015 at 6:08 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Hi Marty. > How are you? > I am going to have the endoscopy today. First I will go to the blood area > and have blood checked. Then to dr for consultation. Then to have the > endoscopy. > Long day. > Needles are no fun but we get used to them. Some draws are good some bad. > > Pray for me and all in need. > Love Jeanie > > Sent from my iPhone > > On Jan 21, 2015, at 7:52 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Hi Jeanie, > > You have been through so much it's about time that you got a break or two. > Not feeling that IV go in and no black and blue afterward then having a BMA > with little or no pain. > > Well, two out of two ain't too bad is it? <360.gif> > > When I was a kid I had a phobia, and it was needles. I hated them that on > the day my school was giving shots I told my mother that I was sick and > couldn't go to school that day. So, she kept me home and I went to school > the next day. Guess what? I got the shots that day. > > OK I'm in the army and in those days you had to walk down an isle to get > all of your shots. They used a machine that looked like a gun and I thought > it wouldn't hurt. Guess what? It did! > > Then when I was 45 years old I got CML and went for a bone marrow > transplant. So many, many needles that I just got used to them. Then having > 17 BMB's. It looks like needles and me are just like twins, always > together. Not to mention that one of the aspiration needles break off and > lodge in my illiac. So in go more needles and an in-cession follows to > remove that needle. Then four stitches, of course using another needle. > > > So about 4 years ago my kidneys fail and I go on dialysis. Two very large > needles are stuck into my arm every Monday, Wednesday and Friday, and they > stay in there for four hours. > > I wouldn't say that I have gotten used to them but maybe I just don't pay > that much attention to them anymore. > > So much for any phobias., but life goes on. Hopefully I will be getting > some more needles for a kidney transplant soon. Now doesn't that sound > warped from someone that had a phobia against needles? It just all depends > on how one looks at it I guess... > > 18's, > > Marty > > > > On Wed, Jan 21, 2015 at 7:27 AM, 'Icandoallttc' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Hi Marty and thanks so much for that uplift. I have been dreading it for >> some reason. >> I pray that you get your kidney soon-- I know those fistula operations >> are tedious. >> The procedure I dread most is the IV. >> My last one last week was a miracle. The nurse put it in and I didn't >> feel a thing. Later I looked for the black and blue mark left by the IV >> and no sign at all. I have never had this before. It's usually black and >> blue and swollen. >> My Bma has hurt very little. Thank The Lord!!! >> >> You are our spice of life and thanks for being there for. And thanks to >> all if you for your prayers and uplifts. >> Blessings >> 18's jeanie<emoji_u1f42c.png><emoji_u1f42c.png> >> >> >> Sent from my iPhone >> >> On Jan 20, 2015, at 10:06 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Jeanie, >> >> Good luck with your endoscopy. They usually do put you out for that >> procedure. I don't know if they will use a Propofol cocktail but if they do >> you will go to sleep and when you wake up you will still think that the >> procedure was not yet done. Very good sleep with no after effects. I have >> had at least a dozen of them. Every time they operate on the fistula in my >> arm they use it. It looks like I will be going in for another procedure for >> my fistula, there is a narrowing in two sections. This will make 13 >> procedures in the last 12 months. I sure hope that a kidney transplant >> will be coming soon. >> >> I have to share a story about my anesthesia doctor. She knows me so well >> that we are on a first name basis. So, the last time that I had to be put >> out I asked her if I could "knock myself out" Of course I was only kidding >> but she told me that she would let me do it to myself. >> >> So, i'm in the operating room and she is standing over me and she puts >> the oxygen mask on my head and as she is holding the needle that is >> connected to me IV she tells me to put my thumb on the plunger but not to >> push it until she tells me so. >> >> Ok I got my thumb on the plunger and she tells me to push it very slowly >> when she counts to three. So, I'm waiting and her thumb is on top of mine >> and she counts "one" then she starts to count "two" and the next thing I >> know is that I am waking up in the recovery room. >> >> When she came to see me I asked her if I was the one that knocked myself >> out and she just smiled. >> >> By the way this Propofol is white in color and looks like milk. >> >> Humor is the spice of life.<360.gif> >> >> 18's, >> >> Marty >> >> On Tue, Jan 20, 2015 at 3:19 PM, 'Icandoallttc' via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >>> 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 <wa2...@gmail.com> 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 < >>> 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 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