Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Dear Lottie, My Faith in the Lord is all that has brought me through life in general. Thank you Lottie and everyone for the congratulations. We are all fighting the same battle and we shall all win. I thank you for all the words of encouragement. I am able to fight a stronger battle with all the information all of you have posted over the last couple of years. I could not have made it this far without you guys. As my doctors are not specialist they are only MD's training to go into their special lines (studying to be a bone marrow transplant specialist, One actually was studying blood cancer's, they are still training and can be rather frustrating sometimes. The BMB and BMA the first one the woman Dr was her first time she messed around until the lidocaine had worn off and wanted to remove the bone without giving more med. The second time, they gave me during the hour and a half of trying to get anything, 4 injections of demoral 11 shots of lidocaine 3 shots of phenagrin and i still was vomiting from the pain in the leg not from them trying to get the marrow.I told them it was hurting in my leg and they said oh I was hitting the nerve and kept on it. Two doctors and 3 new holes and 11 tries and they could not get anything but they damaged my nerve running down my right leg which now gives me lots of pain, also they damaged my lower back on the right side. My daughter was in the room she said the second dr was literally off the floor with all her weight on my back during the procedure. So I highly suggest you make sure the Dr doing the procedure has had plenty of practice. I personally will not allow another of either. Well not unless I am gauranteed a profesional. I go to a charity hospital which is also where the Dr's get their practice, really have no choice as to who does anything on my so I have to be my own advocate. Once again I thank you all with all my heart for all the wonderful information you have all posted, and the congrats. God Bless you all Anita ________________________________ From: Lottie Duthu <lotajam@...> CML < > Sent: Wednesday, June 3, 2009 8:20:22 PM Subject: [ ] Sprycel response Dear Anita, Having written to you and met you in person, I know how much this response means to you. You had a tough row to hoe, but you got through it because of your faith, even though the doctors had given up on you. Shame on them. I can say that I am glad you made it because I find you to be a remarkable person and a fighter. Jerry Mayfield on his blog had the saying " Never Give Up " . We can use you as well as him as role models, as neither of you ever gave up. I am so happy for you and I wish you many years to enjoy your new status. Blessings and much joy, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Oh my goodness Anita, I can't even imagine how that must have felt. I was scared to pieces when I found out I had to have a BMB done. One of the nurses told me that it was very painful and my daughter in law worked for the Dr that I see now and she said that they would hear people screaming from the pain when having them done. When I actually had it done, the nurse came in a few minutes before the pathologist did and shot me up with some demerol and adavan and then the pathologist shot me up with lidocaine. I felt a little pressure but that was all until they pulled the fluid out and it felt like they was pulling my toes up through my hip but it only lasted a second so it wasn't too bad. I have already told my Dr that when I have another one done, he will be giving me drugs so I won't feel the pain. He laughed and said that he would but that it wouldn't hurt because HE was gonna do it. I don't care who does it, I want drugs beforehand, lol. From: anita <awristen1@...> Subject: Re: [ ] Sprycel response Date: Thursday, June 4, 2009, 12:36 PM Dear Lottie, My Faith in the Lord is all that has brought me through life in general. Thank you Lottie and everyone for the congratulations. We are all fighting the same battle and we shall all win. I thank you for all the words of encouragement. I am able to fight a stronger battle with all the information all of you have posted over the last couple of years. I could not have made it this far without you guys. As my doctors are not specialist they are only MD's training to go into their special lines (studying to be a bone marrow transplant specialist, One actually was studying blood cancer's, they are still training and can be rather frustrating sometimes. The BMB and BMA the first one the woman Dr was her first time she messed around until the lidocaine had worn off and wanted to remove the bone without giving more med. The second time, they gave me during the hour and a half of trying to get anything, 4 injections of demoral 11 shots of lidocaine 3 shots of phenagrin and i still was vomiting from the pain in the leg not from them trying to get the marrow.I told them it was hurting in my leg and they said oh I was hitting the nerve and kept on it. Two doctors and 3 new holes and 11 tries and they could not get anything but they damaged my nerve running down my right leg which now gives me lots of pain, also they damaged my lower back on the right side. My daughter was in the room she said the second dr was literally off the floor with all her weight on my back during the procedure. So I highly suggest you make sure the Dr doing the procedure has had plenty of practice. I personally will not allow another of either. Well not unless I am gauranteed a profesional. I go to a charity hospital which is also where the Dr's get their practice, really have no choice as to who does anything on my so I have to be my own advocate. Once again I thank you all with all my heart for all the wonderful information you have all posted, and the congrats. God Bless you all Anita ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Wednesday, June 3, 2009 8:20:22 PM Subject: [ ] Sprycel response Dear Anita, Having written to you and met you in person, I know how much this response means to you. You had a tough row to hoe, but you got through it because of your faith, even though the doctors had given up on you. Shame on them. I can say that I am glad you made it because I find you to be a remarkable person and a fighter. Jerry Mayfield on his blog had the saying " Never Give Up " . We can use you as well as him as role models, as neither of you ever gave up. I am so happy for you and I wish you many years to enjoy your new status. Blessings and much joy, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Not to contradict anyone, just to add my experience to the brew, but this last time I decided to have my biopsy peformed without heavy painkillers or being put under. I had heard it didn't hurt that much, and I spoke to the doctor who would do it. His bottom line was, sure, it hurts, but not that bad, and the hurt doesn't last that long. And I wouldn't lose a day due to being druggy. He was right. It wasn't that bad at all. Twenty minutes after he did it, I was out of there. I believe I'm 1182 on Zavie's scorecard. I was diagnosed April 2007. Not PCRU, but am at 0.02%. I've not had really bad side effects once I got acclimated to the Gleevec. Fatigue, lethargy is the main problem. The mental letdown one suffers was the worse thing. For all I know, that may also have a lot to do with my fatigue--it may be mostly low-grade depression. But, I know I'm lucky compared to many who have much worse side effects. I still exercise pretty intensely (for my age (61), anyway). Indeed, a number of people, including my oncologist, have suggested I might want to slow it down a little. Unfortunately, when it comes to exercise, I'm a feast or famine guy. When I was diagnosed I weighed 170 lbs. about (I'm five ten). I went back to my old eating habits (ice cream, other sweets in copious amounts), and before I knew it I had gained thirty pounds. The oncologist thought I might be retaining fluid, but she was puzzled: it didn't seem to be fluid. I set her mind at ease: " Blue Bell ice cream is what I'm retaining. " I'm starting to eat like I should, giving up almost all sugar, and the weight is slowly coming off. Plus I feel a lot better when I'm off sweets. Good luck to everyone: Ted Fontenot From: anita <awristen1 (DOT) com> Subject: Re: [ ] Sprycel response groups (DOT) com Date: Thursday, June 4, 2009, 12:36 PM Dear Lottie, My Faith in the Lord is all that has brought me through life in general. Thank you Lottie and everyone for the congratulations. We are all fighting the same battle and we shall all win. I thank you for all the words of encouragement. I am able to fight a stronger battle with all the information all of you have posted over the last couple of years. I could not have made it this far without you guys. As my doctors are not specialist they are only MD's training to go into their special lines (studying to be a bone marrow transplant specialist, One actually was studying blood cancer's, they are still training and can be rather frustrating sometimes. The BMB and BMA the first one the woman Dr was her first time she messed around until the lidocaine had worn off and wanted to remove the bone without giving more med. The second time, they gave me during the hour and a half of trying to get anything, 4 injections of demoral 11 shots of lidocaine 3 shots of phenagrin and i still was vomiting from the pain in the leg not from them trying to get the marrow.I told them it was hurting in my leg and they said oh I was hitting the nerve and kept on it. Two doctors and 3 new holes and 11 tries and they could not get anything but they damaged my nerve running down my right leg which now gives me lots of pain, also they damaged my lower back on the right side. My daughter was in the room she said the second dr was literally off the floor with all her weight on my back during the procedure. So I highly suggest you make sure the Dr doing the procedure has had plenty of practice. I personally will not allow another of either. Well not unless I am gauranteed a profesional. I go to a charity hospital which is also where the Dr's get their practice, really have no choice as to who does anything on my so I have to be my own advocate. Once again I thank you all with all my heart for all the wonderful information you have all posted, and the congrats. God Bless you all Anita ____________ _________ _________ __ From: Lottie Duthu <lotajamcomcast (DOT) net> CML <groups (DOT) com> Sent: Wednesday, June 3, 2009 8:20:22 PM Subject: [ ] Sprycel response Dear Anita, Having written to you and met you in person, I know how much this response means to you. You had a tough row to hoe, but you got through it because of your faith, even though the doctors had given up on you. Shame on them. I can say that I am glad you made it because I find you to be a remarkable person and a fighter. Jerry Mayfield on his blog had the saying " Never Give Up " . We can use you as well as him as role models, as neither of you ever gave up. I am so happy for you and I wish you many years to enjoy your new status. Blessings and much joy, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2009 Report Share Posted June 5, 2009 Great idea Ted! I gather you are in Texas since you have a taste for Blue Bell icecream. Who is your doctor with the painless (relatively) BMBs???? I want your doctor!! Rhonda, in Houston Sent from my Verizon Wireless BlackBerry [ ] Sprycel response Dear Anita, Having written to you and met you in person, I know how much this response means to you. You had a tough row to hoe, but you got through it because of your faith, even though the doctors had given up on you. Shame on them. I can say that I am glad you made it because I find you to be a remarkable person and a fighter. Jerry Mayfield on his blog had the saying " Never Give Up " . We can use you as well as him as role models, as neither of you ever gave up. I am so happy for you and I wish you many years to enjoy your new status. Blessings and much joy, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 BMB I have realised that I am whooze at heart I have drugs - don't want a memory of pain to scare my mind. My BMB was done only when I was diagnosed and that was enough. So those of you who routinely have BMA's and BMB's I salute you. Sprycel I have just been reading a posting from a very young woman (single) has a friend and two shepherds (dogs) but could be her spiritual hearts as well - glivec did not work, sprycel has not worked that well with some complications, has sprycel induced drug aneamia and has just been advised that she is to have a BMT as her option. She is worried she is to lose her job, and all those other financial issues that goes with cancer of any sort and being off work for long periods of time. She is all rugged up resting today and if she feels a little weaker to go to the hospital for a transfusion asap. So if everyone could - would you think of young TraceyJ today - those good wishes should find their way to her - just to give her a lift - onto another pathway of CML Sue (Aussie) __________ Information from ESET NOD32 Antivirus, version of virus signature database 4134 (20090605) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 Hi Sue, Tracey will surely be in my prayers! From: Sue <hollie@...> Subject: [ ] Re: Sprycel response Date: Saturday, June 6, 2009, 1:25 AM BMB I have realised that I am whooze at heart I have drugs - don't want a memory of pain to scare my mind. My BMB was done only when I was diagnosed and that was enough. So those of you who routinely have BMA's and BMB's I salute you. Sprycel I have just been reading a posting from a very young woman (single) has a friend and two shepherds (dogs) but could be her spiritual hearts as well - glivec did not work, sprycel has not worked that well with some complications, has sprycel induced drug aneamia and has just been advised that she is to have a BMT as her option. She is worried she is to lose her job, and all those other financial issues that goes with cancer of any sort and being off work for long periods of time. She is all rugged up resting today and if she feels a little weaker to go to the hospital for a transfusion asap. So if everyone could - would you think of young TraceyJ today - those good wishes should find their way to her - just to give her a lift - onto another pathway of CML Sue (Aussie) __________ Information from ESET NOD32 Antivirus, version of virus signature database 4134 (20090605) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset. com Quote Link to comment Share on other sites More sharing options...
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