Dear Jeannie,
I am so deeply sorry to hear about your news. I am and will continue to say lots of prayers and send healing and peaceful energy your way. Stay positive Jeannie. I imagine how scary this is, but I trust that Moffit can figure it our with you and create a plan that will help. Keep the faith. Dr. Fernandez saved my best friend's life there at Moffit. I just went to U of Chicago to get my test results and they had lost my blood! so they never did the bcr-abl..so now I go tomorrow for a blood draw, will wait two more weeks and then get results and take action from there. Still on sprycel holiday but must re uptake soon. ... went to Mayo for a week..very helpful....going back in February to see neuro-muscular docs...getting to the bottom and there for tx options for my side effects from sprycel. ....I know they will be able to help me...just as I know someone out there can help you as well... Low dose ponatinib- 15 mgs to start and see if it works for you.... if you have a mutation may be an option for you...take good care and know I am thinking of you..praying hard. Beth -----Original Message----- From: gfrankli <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Jan 8, 2015 2:51 pm Subject: RE: [CMLHope] Bad need Prayers and healing thoughts.... Sent from Samsung Mobile. -------- Original message -------- From: 'Icandoallttc' via CMLHope Date:08/01/2015 1:21 PM (GMT-05:00) To: [email protected] Subject: [CMLHope] Bad need Just got back from Moffitt. All counts were up and uremic acid was high. Dr took me off sprycel and put me on Hydrea, and other drugs. Took another blood test for mutant. Will know next week if mutant is problem. Pray for me and all in need. Jeanie Sent from my iPhone On Jan 8, 2015, at 11:07 AM, Marty Gartenberg <[email protected]> wrote: Hi again Sherri, Hopefully you will be able to be treated for this condition. It seems that as most of us get older we start suffering from some very unusual things, but that is the price we must pay to remain alive. We just have to do whatever we can to keep on going because we have no other choice. My kidneys failed four years ago and I must be on dialysis because it is keeping me alive until I can hopefully receive a kidney transplant. This happened because when I received a bone marrow transplant more then 25 years all of the radiation and chemotherapy started to destroy my kidneys, but i'm still alive today because of it. We all have our own battles in life and that is just the way it is. I wish you much health and happiness in this New Year. 18's, Marty On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson <[email protected]> wrote: Hi Marty, Happy New Year. I hope you are well. Thanks for the research I enjoyed article. I could only wish it was as simple as being as side effect of my TKI. In my case, nothing is ever simple LOL. What I have is called Autonomic Neuropathy. Basically, my Autonomic Nervous System has malfunctioned. Here is a link for you to read if you would like to. http://en.wikipedia.org/wiki/Dysautonomia In a nutshell, Autonomic Neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion. It isn't a specific disease. Autonomic Neuropathy refers to damage to the autonomic nerves. This damage disrupts signals between the brain and portions of the autonomic nervous system, such as the heart, blood vessels and sweat glands. This can cause decreased or abnormal performance of one or more involuntary body functions. Autonomic Neuropathy can be a complication of a number of diseases and conditions. And some medications can cause autonomic neuropathy as a side effect. Signs, symptoms and treatment of autonomic neuropathy vary depending on the cause, and on which nerves are affected. L'Chaim, Sherri On Wed, Jan 7, 2015 at 7:02 PM, Marty Gartenberg <[email protected]> wrote: Hi Sherri, I did a little research on your no sweating problem, and it is probably a side effect of your TKI treatment. I also ran across an article which you can read here. It does mention something about the lack of sweating. It probably has nothing to do with your problem but maybe you should read it anyway. http://en.wikipedia.org/wiki/Fabry_disease 18's, Marty On Wed, Jan 7, 2015 at 5:29 AM, sherri swanson <[email protected]> wrote: Hello, I've had CML for 12 years and I've taken Gleevec for those 12 years. I've also experienced night sweats for many years. At first I was told that it was due to menopause because of my age at the time. Go figure. When that was no longer an option, the only thing left was the Gleevec. Since being dx'd with the CML in 2003, I've been dx'd with other chronic illnesses that are just as serious. With these new illnesses came a new problem. I no longer sweat at all. So now I have the complete opposite problem. No matter how hot it is, I never sweat. I a way, it's nice because I'm always cold and I long for very hot days so I can go out side in the heat. But my oncologist has warned me to not do it for very long as I have no way to control my body temperature. Unfortunately, it works the same way with the cold. My body temperature is a constant 95 degrees. So, in answer to your question, yes, the Gleevec does cause night sweats. It is one of its side effects. Unfortunately, I was not able to find a remedy for my night sweats other than going to the extreme which I do not recommend. <332.png> I hope everyone has a good New Year and is healthy. Keep my posted as to what you find out. Even thought I no long have this issue, I would still like to be kept in the loop. L'chaim Sherri On Tue, Jan 6, 2015 at 4:19 PM, 'Marcie Goodman' via CMLHope <[email protected]> wrote: Hello, Susan. Gosh, we are just sweating through this it seems. I will see what may be available naturally, as I don't want hormones either. Sorry you are experiencing this same problem which I hope to solve. Best wishes to you, Roy and your beautiful family for a blessed New Year. Marcie Sent from my iPad On Jan 5, 2015, at 10:17 PM, "'Susan Zimmerman' via CMLHope" <[email protected]> wrote: Dear Marcie, I have had night sweats for years, intensifying after my dx in 2005. I have day sweats, too. When I stand up for more than five minutes to do anything at all I start profusely sweating from weakness. I think part of this is from the bosulif, but most is from the stroke weakness and need for hormones. I will not take artificial hormones and have not gotten the good kind that are specially made for each person. I totally sympathize with you Marcie. You might want to go to a naturalist doctor about getting a test for hormones and then they will make a compound for you of cream that usually works. Regular md's only know to prescribe the synthetic or horse hormones which do cause cancer. That's my take on it, hope you find some relief!!! Thanks for your always uplifting posts! Happy New Year to you, too! Susan F. Zimmerman -----Original Message----- From: 'Marcie Goodman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Jan 5, 2015 8:41 am Subject: [CMLHope] Night Sweats Happy New Year, dear friends. I'm wondering if any of you suffer with night sweats as a side effect of your TKI. I do, and have, over the years of my treatment. I don't know that it is happening more frequently but the sweats seem to be more intense. Is there anything that you know of that will help? Many thanks for always being there to offer encouragement and assistance. 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