Thanks Marty, so right. Your Doctor isn't you and some don't read up on the recent studies and etc. My onc told me he wouldn't want to know everything about a disease if he had it, but I am just the opposite. I read everything I could find on CML when I was first dx. I am a researcher and I believe the more knowledge we have the better we can use the medicines to our advantage. However, that said, it is hard to read all the side effects of our meds and then plop them in our mouths. I use what I call faith and meds. It seems to work for me. Blessings to all, Jeanie<3 In a message dated 8/17/2013 4:44:52 P.M. Pacific Daylight Time, [email protected] writes:
Dear Jeanie, Beth and everyone else that may be reading this... It is your bodies and if it doesn't feel right (the medicine, proton pumps or anything else then you must question it) And do you know why? Medicine is called a practice... 18's Marty On Sat, Aug 17, 2013 at 6:20 PM, <[email protected]_ (mailto:[email protected]) > wrote: Thanks Marty and so sorry you had to go through that and glad you are back to normal. We are called warriors and that's exactly what we are. We battle this disease and the side effects daily and worry about our blood counts daily, at least I do. Some of us have other health problems that are also life threatening, and then we are having to mix our meds with our CML drugs and that is a struggle in and of itself. I remember when I was in the hospital one time having my blood cleansed, the counts just wouldn't come back down even with the cleansing. I finally talked my onc into putting me on Sprycel. My PCD had me on a proton pump inhibitor that they were giving me twice a day. Before I got the Sprycel my onc had me on 600 mgs gleevec and it wasn't helping at all. So here I am in the hospital reading the pamphlet that comes with the Sprycel and it says no proton pump inhibitors with Sprycel. Well, they kept trying to get me to take it, and I showed them the info. I finally refused to take it. I feel those inhibitors were probably keeping the Gleevec from working. Sometimes we just have to read and inform ourselves and even then we might be talked into taking a drug that isn't good for us. Have a good weekend all, Jeanie<3 In a message dated 8/17/2013 2:20:40 P.M. Pacific Daylight Time, [email protected]_ (mailto:[email protected]) writes: Hi Jeanie, I would like to tell you and everyone else a story about me and what recently happened to me. As you know, I am on dialysis and am also on Warfrin, a blood thinner. In order to get my dialysis they have to stick two large gauge needles #14 gauge into my arm and into my access point that is under the skin. Once my dialysis is finished they remove the needles and I have to hold several gauze pads over my access points for about five minutes in order to stop the bleeding. Well, this past Monday the bleeding could not be stopped from my arterial part of the port called the fistula. I had to hold it on for more then an hour but it still wouldn't stop bleeding so they put a special clamp over the access points and left it there for another half hour. When they removed it the blood just started spurting out again. The clamp was put on once more and it finally stooped bleeding. I went home with the clamp still on and had dinner. After I finished my dinner I decided to remove the clamp and it again started spurting out again all over the kitchen floor. I then put the clamp on again and went to the hospital for further treatment. I'm telling you this story for a reason that doesn't as yet make any sense but you will understand more... When I arrived at the hospital that took a CBC blood test and told me that it would be ready in an hour. Now here is where my mind took over. Because my bleeding was very severe I thought that my platelets may be low. This is exactly what happened to me twenty three years ago and I was then diagnosed with Leukemia. So with this happening my mind started in with what if my Leukemia has returned, and I started sweating until the results came back. Now you all know me, but I am still human just like all of the rest of you but I usually know how to control my mind and feelings and thoughts. Emotions are very powerful if you can't or won't control them, but this time it just brought back some terrible thoughts because of what I once went through. I always try to discipline myself through most things but sometimes just being human it is something that we must all try to deal with. So Jeanie and all of the rest of you, whenever your waiting for the results of any tests I want you to try and remember that your all human and sometimes your going to worry about the test results until you get them back. It is only then that you will have to deal with them, and you will whether good or bad. In my case the bleeding was caused by to high an INR level was in my blood (to thin from the doses of Warfren). The bleeding finally stoped by itself after four more hours and I was discharged from the hospital after 1:30 AM and we went home. I started eating more dark greens and some Broccoli and asparagus and lessened the dose of Warfren after speaking to my doctor. When I went back on Wednesday for my four hour dialysis treatment and once it was finished the bleeding stooped within five minutes, as it usually does You all remember what I always say, your mind does control your body. CML is a strange disease it does effect both your mind and body. Even after these past twenty three years for me, and I have learned to be able to control my mind. I feel very close to all of you, or I wouldn't have told you this personal story. We must live with what we have, and the key word in that statement is live. Remember that we are all human. 18's Marty On Sat, Aug 17, 2013 at 11:50 AM, <[email protected]_ (mailto:[email protected]) > wrote: Hi and I did almost the same on Tasi. I never reached PCRU until I was put on Sprycel. This happened almost 6 years after I was dx. I saw so much of my doctor the nurse told me I should put a bed in the office. I have scars in my arms where they took blood so often. I just reached the stage of going every 6 months about 6 months ago, but I do have my blood checked by my primary doctor often. It's funny about our blood test, we want to see them but we are afraid of the results. I am still afraid after all these years. I know how you can be going along well and then all of a sudden everything goes out of whack. Faith and pills get me through each day. Good luck and blessings everyone. Jeanie<3 In a message dated 8/15/2013 8:44:21 A.M. Pacific Daylight Time, [email protected]_ (mailto:[email protected]) writes: I was on Tasignia until it stopped working and had blasts so they admitted me to hospital and started oral ponatanib 45mg daily. Took 2 solid months of hospitalization for my neutrophils to come down and platelets to go up. Got a unit of blood almost every single day and sometimes two, and would get at least one bag platelets per day and often 3 or more. Finally my numbers started to pick up and they let me go home. I havn't felt what I would call "well" since being on this drug but at least they are saying I am in Hematological remission, not molecular but that is my goal. I see my hematologist every week for labs to determine if I need another unit of red blood cells and usually my hemologin has been running around 8.5 which means I get a unit of blood. So on Tuesdays i go for labs and then return on Wednesdays for blood if needed. This sure beats the alternative - not being well. On Gleevac I experienced eye bleeds. From: Susan Zimmerman <[email protected]_ (mailto:[email protected]) > To: [email protected]_ (mailto:[email protected]) Sent: Wednesday, August 14, 2013 4:49 PM Subject: Re: [CMLHope] Ponatinib Thanks Maggy for answering. I'd like to hear more about how you are doing on this drug. Not sure which one they will put me on after determining why I am having brain bleed tendencies. Was on gleevec for 2 yrs 3 mos, on nothing now for six years because of brain bleeds. Numbers were going up upon last check, tried 15 days of tasigna and had an indication again of brain bleeding. Sept. 4th going to Northwestern Univ. again to try to determine the cause. Blessings, Susan F. Zimmerman -----Original Message----- From: [email protected]_ (mailto:[email protected]) <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Sent: Tue, Aug 13, 2013 2:36 am Subject: Re: [CMLHope] Ponatinib Yes, been on this drug since around first week of June. 45 mg I believe. Was hospitalized for almost two months while the drug did its thing. From: John Barrons <[email protected]_ (mailto:[email protected]) > To: CML Hope <[email protected]_ (mailto:[email protected]) > Sent: Monday, August 12, 2013 10:53 AM Subject: [CMLHope] Ponatinib I have had CML for almost 14 years now. I failed gleevec and sprycel and am now on ponatinib. Is there anybody in this group who is on this drug? 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