Hi Sherri, I think the tki's contribute to kidney disease. I think that I am in the beginning of the disease and I have been on tki's for 11 years now. Hang in in there; blessings Jeanie<3 In a message dated 1/9/2015 3:21:09 A.M. Eastern Standard Time, [email protected] writes:
Hi Marty, Thanks for the prayers and right back at ya. I've been struggling with my kidney disease for many years and didn't know it, and then one day voilà the doctors found that there was a problem and that I'd been fighting it for years hence the diagnoses of Chronic Kidney Disease. And the funny thing is, I'm the only one in my entire family that has any of these diseases. My family had its share of health issues from heart disease to diabetes. But never anything like what I have. All my doctors just shake their heads. I tell them that I like to keep things interesting. And what they like is that I have a sense of humor. And at this point, it is much better to joke and laugh than to worry and cry. While I still take what I have seriously, I'm just happy to be here. I would be a lot happier if the weather here would warm up. For crying out loud it was -5 here yesterday and I was out in it. Now that is one hearty person or a very foolish one. The jury is still out on that one. Today it is going to be a balmy 8. Woohoo! A heat wave. And, again I'll be out in it as I have to go and get a Rx that I need. L'chaim, Sherri On Thu, Jan 8, 2015 at 10:40 PM, Marty Gartenberg <[email protected]_ (mailto:[email protected]) > wrote: Dear Sherri, Yes, you are a fighter and it takes one to know one. I pray that everything turns out well for you. And you are correct that all of the radiation and chemotherapy did destroy both of my kidneys. It has been over 25 years that I had my BMT. It took many years for my kidneys to fail and that is probably why most transplant centers will usually not use total body radiation any more unless it is really needed. 18's, Marty On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson <[email protected]_ (mailto:[email protected]) > wrote: Hi Marty, The doctors are trying to treat the different illnesses that are included in my condition. There are so many and they do so many different things, that I am happy just to to be here. I agree that as we get older there are some unusual things that that find us. But in the long run, we all got something. I'm a survivor. It's what I do. So when I found out on Monday that I have a large mass on my thyroid, I told my doctor I guess we're going to be busy this winter. At least I'm not an alarmist. I too have trouble with my kidneys. Not to the extend that you do, I'm working to keep myself at the current level of stage III Kidney Disease. Some days, I'm good others, not so much. Lately I've not been doing so good and I've had to go and buy new shoes as my feet have been so swollen that my current size no longer fit. I wear compression socks all the time as well. My Nephrologist ran some blood work and found that my sodium was very low and and so was a bunch of other levels. Now, he is an alarmist. If I even look like I'm getting a cold he freaks out. I love him dearly, and I do what he says, but I can't sneeze without him making me go see my GP or the Oncologist or whatever doctor he thinks I need to see. I've heard that when you have a BMT and have to have radiation and chemo, sometimes kidney failure is possible. How long have you been on the list for transplant? Well, I'm glad that you are here and that you are strong. You're an inspiration to all of us. Thanks for all you do Marty. L'chaim Sherri On Thu, Jan 8, 2015 at 10:07 AM, Marty Gartenberg <[email protected]_ (mailto:[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]_ (mailto:[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]_ (mailto:[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]_ (mailto:[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. 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]_ (mailto:[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]_ (mailto:[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]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[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. Marcie Sent from my iPad -- -- [CMLHope] A support group of _http://cmlhope.com_ (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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[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]_ (mailto:[email protected]) . 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