Only one word for this... EXCELLENT!!! On Sat, Jan 24, 2015 at 5:44 PM, Myvety2k via CMLHope < cmlhope@googlegroups.com> wrote:
> Hi Jeanie. all of my counts are good. As of 12/26/14 Potassium was 4.2 > the norm is 3.5 to 5.1. WBC was 5.7 norm is 3.8 to 10.6, PLT is 2.1 norm is > 150 to 440, my RBC is always low been this way from the start on Gleevec. > 3.84 the norm is 4.10 to 5.90. Everything else is HCT 39.6, MCV is 1.3.1, > MCH 34.8 these are always a little high or low but the doctor says don't > worry about them. > And I don't have any diarrhea. No fever just nausea. I saw my internist > last week and everything checked out O. K., heart, lungs, blood pressure, > no temp. had blood work done Wed. I'm waiting for the results to come in > testing my testosterone levels. > > They gave me Prevnar-13 shot at the office to. > > I'll give it a few more days and see what happens. > > greenie > > In a message dated 1/24/2015 3:25:43 P.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > > Hi Greenie > Check your potassium and ect. You might have an imbalance. That > happened to me when gleevec quit working. I was so sick. Do you have > diarrhea? I had both. I finally started taking psyllium > seed--crushed--you can get them at health food store. Just go by the > directions. > It cured the diarrhea but I had to finally change tkis. > > > Blessings Jeanie 18's [image: 🐠][image: 🐠] > > On Jan 24, 2015, at 11:39 AM, "'Icandoallttc' via CMLHope" < > cmlhope@googlegroups.com> wrote: > > Hi Richard and hang in there. I wake up with nausea every morning > which I think is the hydrea. Do you eat a big meal with gleevec? I know I > had to and no spicy foods. Your success on gleevec has been great. It > quit on me after 5 years. You could just have a bug. > Good luck and blessings. > Jeanie > > Sent from my iPhone > > On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope < > cmlhope@googlegroups.com> wrote: > > Hi to my friends in our group, well I've been on Gleevec for 15 years > and 14 days all of a sudden for the last 4 days I'm having nausea > problems. I'm taking some promethazine that helps some what but it's not a > fun thing. I have no idea what started it either. I had this problem > before when we lived in Springfield, MO. I got over heated and got hit with > nausea every day for a little more then 2 years then I awoke one morning > and it was like someone turned off the switch and it was gone. This time > of the year it's not hot here so I know that's not what caused this problem. > > I'm going to take a Gleevec break for a week or two to clean out my system > and hope that I get back to normal. I did this before about 6 years ago > when I had a sinus infection and the doctor back in Indiana put me on and > anabolic that interfered with my Gleevec so we stopped Gleevec for 26 > days. After getting blood work some cancer cells did show back up in my > blood work but after stating Gleevec again the next test showed that I was > clean again. > > My doctor at that time was doctor Tallman and he gave me a call and said > "well if it worked before it will work again" and that was that. So I have > my fingers crossed to see what happens. I can't stand this nausea problem, > my heart goes out to the women that have babies and have to put up with > nausea. I just hope it's the Gleevec again and not something else. My > blood counts are O. K. so I'm not worried about that. This does not help > my anxiety problems > > Will keep you all up to date as how things go. > > greenie > > In a message dated 1/23/2015 11:35:02 P.M. Eastern Standard Time, > rbhuffm...@gmail.com writes: > > Seventeen and on my first adventure this wonderful world we live in. > > Richard H. > > On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote: > >> That's cute Richard--how old were you? >> My IV went in good-no swelling. >> This morning I am sick-- sore throat and mucus. >> Glad everything went good Sherri but couldn't they give you something for >> pain?? >> Blessings Jeanie >> >> Sent from my iPhone >> >> On Jan 23, 2015, at 12:03 AM, Richard H <rbhuf...@gmail.com> wrote: >> >> May I add my sea story of needles, I don't like needles but do not >> have a phobia. When I arrived at boot camp the first thing was get our >> shots. We walked through a line getting shots in both arms as mentioned. >> They were using hugh syringes and had large pillows with the needles that >> was changed while we were stepping in front of them. Someone was calling a >> slow cadence of step, step. As each recruit stepped He was given a shot in >> each arm. All of a sudden the corpsman I was getting ready to step in >> front of yelled "BRING BACK MY NEEDLE." The recruit in fount of me had it >> hanging in his arm. When I received the 4 pricks for allergy testing I >> then had to sit in the dentist chair I promptly passed out. >> >> Richard H. >> >> >> >> >> On Thursday, January 22, 2015 at 6:50:17 AM UTC-6, greenie wrote: >> >> Jeanie, Needles lord knows I hate them. The first time I had a blood >> test it was to get married. My Doctor lived 3 blocks away form me and I >> worked for him when I was in High School. They did the blood work and he >> walked in after and took one look at me and he put is hand behind my head >> and pushed it down and told me to pushed as hard as I could to keep me from >> passing out. >> >> Then when I went into the Navy I was on active duty for a year and a haft >> they found out that I didn't get any of my shots. Well you know what >> happened then, I received them all at once, both arms. So years go by and >> I end up with CML and we all know about needles. Yes, some are good and >> some are bad. I had to get blood work this Monday and I think the lady >> took the needle outside and scraped it on the pavement plus I think it was >> square and bent. I think it when through my arm and out the other side. >> >> And the first BMB all they gave me it was so much fun that I asked them >> to do another one. Ha, Ha. After about 10 or 11 of them I asked to be put >> into lala land which they did but I had to have someone drive me home. My >> wife has to give me a shot of testosterone every two weeks, the needle is >> 1/1/2 in long another fun shot. So for me they do the molecular blood work >> and no more BMB. Thank you. >> >> Take care and hang in their, >> >> greenie >> >> In a message dated 1/22/2015 6:08:12 A.M. Eastern Standard Time, >> cml...@googlegroups.com writes: >> >> 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 < >> cml...@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 < >> cml...@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 < >> cml...@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 < >> cml...@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 < >> cml...@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 <shannon...@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. >> >> ... > > -- > -- > [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. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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