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 🐠🐠 > 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. 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