That's why Mommy Lottie did so much research and posted it on the CML2 site. Too bad she died. She was a great woman, GOD rest her soul.
18's Marty On Wed, Aug 21, 2013 at 10:36 AM, <[email protected]> wrote: > ** > 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]> 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] 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]> 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] 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]> >>> *To:* [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] <[email protected]> >>> To: cmlhope <[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]> >>> *To:* CML Hope <[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? >>> >>> Sent from my iPad >>> >>> -- >>> -- >>> [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. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/groups/opt_out. >>> >>> >>> >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com/ >>> ------------------------------------------------- >>> >>> You received this message because you 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For more options, visit https://groups.google.com/groups/opt_out. >>> >>> -- >>> -- >>> [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. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/groups/opt_out. >>> >> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google 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