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 <[email protected] <javascript:>> > 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, > [email protected] 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 <[email protected]> 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 < > [email protected]> 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 <[email protected]> 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 < > [email protected]> 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 <[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. > > ... -- -- [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. 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