Hi Marcie, I was sorry to read about the passing of your Father. You and your family are in my thoughts. David (Greenie) Greenberg Fort Myers, FL. Club member #48 In a message dated 1/12/2015 7:59:22 A.M. Eastern Standard Time, wa2...@gmail.com writes:
Hi Marcie, My deepest condolences on the passing of your father. My father taught me a long time ago that every day is a good day no matter what happens except if someone that you love passes away. The age of a person isn't as important as what that person did in his lifetime. And from what everyone knows about you I think that he did a wonderful job of bringing you up. This especially shows by what your Rabbi said. It is quite obvious about the conversations your father had with him. And yes, I know all about how parents feel when their children have to go through cancer. It devastated both of my parents. Our Rabbi would sit down and console both of my parents so I know exactly what your Rabbi did for your father. After my bone marrow transplant I decided to write a book. I never published it nor will I ever but I only share it with some people mostly that have been going through CML. Here is a small part of it that mentions my Rabbi. Rabbi and Mrs. Gerald Sussman I first contacted the rabbi that came to visit with me several times, and say some very extraordinary prayers for healing. I already knew him from a temple that I had joined several years prior to my illness. His name is Rabbi Gerald Sussman, and he is the kindest man that I ever met. He is also married to a lovely woman named Bonnie, and they have several children. By the way Bonnie had also gone through Leukemia and is doing well today. In a way I was somewhat embarrassed all of those years prior to me becoming ill because I would hardly attend services that he offered at his temple. When I mentioned that I would like to come to one session of his service and give my speech he was delighted. I had always asked him if he would be kind enough to say those same prayers that he said for me, for anyone that I knew was ill. He of course agreed, and not only for any people of the Jewish religion, but anyone that was ill no matter what faith they were. He would even speak with them, and that led him to knowing almost everyone I was involved in helping. About two years later he would present me with the many letters he received from them. He also without me even knowing it, invited them to attend his temple and listen to the speech I would be giving. 18's, Marty On Sun, Jan 11, 2015 at 10:59 PM, 'Marcie Goodman' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi Jeanie, So sorry you are having a tough time. I'm praying for you to have good test results and a much better week. My 94 year old father passed away on Friday, funeral was today. During evening prayers our rabbi asked that everyone pray for not only my father and our family but for our group struggling with the impact of CML. My dad hated the fact that I had this illness and knew that I had such a wonderful online support family. So lots of prayers for you and all of us headed out from Baltimore all week! Much love, Marcie Sent from my iPhone On Jan 11, 2015, at 9:33 AM, 'Icandoallttc' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi Marty. I feel so bad today!!! Thinks it's from the hydrea. I will print that out and keep it close. I love psalms also. Keep praying. Jeanie 18's Sent from my iPhone On Jan 11, 2015, at 8:05 AM, Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > wrote: Jeanie, I know that your feeling low right now but things will work out for you. You must have this in your heart and I know that you do. FOCUS. This was something that was given to me by one of my close friends when I had to live in that plastic bubble for all of those many months. I would read it all the time and I am now passing it on to you, and it is being sent to you from my heart because I remember my doubts but then again I also remember my strengths. EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... Yes Jeanie you just keep on focusing because you are much more powerful then you think. Now you know why I keep on sending 18's. 18's, Marty On Sat, Jan 10, 2015 at 10:38 AM, 'Icandoallttc' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: Hi Marty Thanks for you uplifting message. I am back to square one with my counts-- 700 thousand platelets 163.28 WBC ANC high Creatine high Potassium high Took me off sprycel. Allipurinoll 2 pills Hydrea 3 twice a day Yes I will fight!!! Just so tired. I think dr will put me on new drug mon. Got to see if there is a mutant. Prays and love to all. 18's. <emoji_u1f41f.png> Jeanie Sent from my iPhone On Jan 10, 2015, at 4:31 AM, sherri swanson <_swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) > wrote: Hi Richard, If it's one thing I got, It's Attitude! At least that's what my mom would tell me when I was a teenager. LOL Sorry to hear about the car. This cold weather can be brutal on a car's battery. Glad you were able to get a new and now you’re good to go. Uor wind chills have been bad too. And we have some open fields so there is nothing to block that wind. The other morning it was so cold that the water froze in our community and none of had any water for awhile. It's a good thing I'm an early raiser and I took my shower while we had water. Currently, it is -7 with a wind chill of -25 where I live and it isn't going to be above zero until 9 am. That's cold. Stay warm Richard and think spring! L'chaim, Sherri On Fri, Jan 9, 2015 at 11:29 PM, Marty Gartenberg <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > wrote: Hi Jeanie, So many things effect your kidneys. The simple ageing factor is just one of them. Some medicines will also contribute to kidney function probably some of these TKI's. Mine finally gave out from all of the chemotherapy and radiation I had more then 25 years ago. I can make a suggestion: If you are not diabetic try drinking cranberry juice. Not the ones that are mixed up with juices like grape juice. Ocean Spray has pure cranberry juice so you might want to try it. Even if you are diabetic they also make a light cranberry juice. You know what? You have been through so much that this is only a bump in the road for you, and so it is for me. We have two choices. One, continue to fight and the other is not an option for me or you. That is why I always end any of my posts with 18's. You just hang in there sweetie. Marty On Fri, Jan 9, 2015 at 7:55 AM, ICANDOALLTTC via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote: 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, _swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) 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 <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > 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 <_swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) > 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. <35C.png> 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 <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > 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 <_swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) > 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 <_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com) > 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 <_swanson.sherri460@gmail.com_ (mailto:swanson.sherri...@gmail.com) > 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 <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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" <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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 <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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 _CMLHope@googlegroups.com_ (mailto:CMLHope@googlegroups.com) To unsubscribe from this group, send email to _CMLHope-unsubscribe@googlegroups.com_ (mailto:cmlhope-unsubscr...@googlegroups.com) 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. 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