Thanks Beth Going to get my blood done tomorrow and see what tki I will take. I sure don't like the hydrea!!!! Keep the prays going. Jeanie
Sent from my iPhone > On Jan 11, 2015, at 2:43 PM, bkbarney via CMLHope <[email protected]> > wrote: > > Jeannie, > > Just letting you know I am thinking of you today. feel so badly you feel so > horrible. Praying it eases and you feel better soon. Fondly, Beth > > > -----Original Message----- > From: 'Icandoallttc' via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Sun, Jan 11, 2015 8:33 am > Subject: Re: [CMLHope] Jeanie's relapse > > 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 <[email protected]> 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 >>> <[email protected]> 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 <[email protected]> >>> 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 <[email protected]> >>>>> 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 >>>>>> <[email protected]> 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, >>>>>> [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]> >>>>>>> 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]> 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 <[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. >>>>>>>>>>>>>> >>>>>>>>>>>>>> Marcie >>>>>>>>>>>>>> >>>>>>>>>>>>>> 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 >>>>>>>>>>>>>> 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