Dear Marty, You've really got a handle on it! And I clear my throat to you, as well! Things with mother-in-law are getting toward the hospice house decision....she can't get free of pain. Thanks for caring. Yes, G_d is really watching over us all, including you! He will go to great lengths to have fellowship with us.
You are so right about the practice of medicine. I urge everyone to listen to their body, take a leap of faith and give yourself a gleevec vacation....if you are in molecular remission. A slight change in your log reduction is no big deal, believe me. I've been off the med for four years now, and still functioning well with no gleevec. Every day I am thankful for each moment. 18's to you all, (LIFE) Susan -----Original Message----- From: Martin Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Mar 19, 2011 6:49 pm Subject: Re: [CMLHope] Kidney function And hi again Susan, I can understand your concerns about all of these drugs. However it seems that you are doing quite well without any of them. Now that is really good news. Yes a diet and eating the right kinds of foods will certainly help with diabetes if you are type two. In fact the stem cell doctor would not do the therapy unless I lost some weight, so I did. You also have to remember that medicine is called a practice because that is exactly what it is. One thing might not effect someone while it could effect someone else. You are correct because you know your body better then anyone else. I am sorry to hear about your mother-in-law. You are a very good person for taking care of her when you have your own problems. GOD watches over these things and I know that HE is blessing you. Susan, 18 in the Hebrew language is the symbol for life and it is spoken as "CHI". It is pronounced like your clearing your throat. 18's to you Susan. Marty On Sat, Mar 19, 2011 at 6:33 PM, Susan Zimmerman <[email protected]> wrote: Hi again Marty, I found a match for a bone marrow transplant, my own sister Sandy. But....they advised using either gleevec, sprycel, or the third one...I am going against my doc's suggestions to be on sprycel, because of the high risk factor of another brain bleed. I had one dose of tasigna...(can't remember the other name) after going thru the hoops to get in a test group before it was legal. It gave me another bad eye bleed, so I knew it was related to the drugs. So from that I am enjoying no drugs for almost four years, ptl. I see that with this stem cell therapy I would not be a candidate as I am not in molecular remission (thru the BCR/ABL test). I am over 1.0 now on the log of testing with BCR/ABL, and am keeping my fingers crossed that I stay in cellular remission awhile longer. I am so blessed by God that I cannot express how very much He blesses me! Staying in the Word is my greatest help. I understand there is a third generation drug being tested and released soon. That is bosatinib, and I am hoping I can last til that comes out before needing something. Surely that one won't have so many dreadful side effects! Plural effusion with sprycel for so many makes me very leery of it. Actually, perhaps I will never need one! Right now I am taking care of my mother-in-law who is dying of lung cancer, and so all my energies are on that. God knows! I am so thankful you received a healing from the diabetes thru that method. If I will be obedient on eating habits I can get rid of it, too, without mortgaging my house again, lol. I am not on insulin, just pills. It is truly a great testimony to all that going off gleevec after reaching total remission about 9 months after beginning it, that gleevec vacations are very very possible to rid yourself of all side affects for awhile. Each one is different, so go with your own knowledge of your body. Some of these doctors know just a little more than we do about how gleevec and all of them work... What does 18 mean? Susan (Indiana) -----Original Message----- From: Martin Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Mar 19, 2011 10:15 am Subject: Re: [CMLHope] Kidney function Hi Susan, I am sorry to hear about your brain bleed and the stroke that you had. Who really knows if it was or wasn't caused by the Gleevec? The thing is that your alive and in cellular remission without any Gleevec. Remarkable! I know that there is a guardian angel looking over you. As far as the stem cell therapy goes, it does work for diabetes but since it is not yet approved I had to pay out of pocket for it. It was very expensive and I had to get a second mortgage on my home, but it was worth it. Before I was to start it I had to be in ABL-BCR and I was. I wonder if it could also help with CML? I couldn't even venture a guess but the way I see it is that why would I first have to be tested for ABL-BCR, and I asked my stem cell doctor. He told me that if there were any active cancer still lurking around then the stem cell therapy could bring that out again, however that was only his guess because he had never tried it out on anyone that has CML. Anyway, I feel that you are also being blessed because you are in cellular remission now. May you always be blessed by GOD. In fact I just said a prayer for you to be healthy and happy. 18's Marty PS my donors name was also Susan who was my sister. Unfortunately she passed away several years ago of something unrelated to her bone marrow donation On Fri, Mar 18, 2011 at 4:08 PM, Susan Zimmerman <[email protected]> wrote: Hi Marty, Thanks for this report. I have been off gleevec for 4 years in May of this year. Two and half years on it, (dx'd Feb. 2005) and got off when a brain bleed occurred. Now my docs say it was not caused by gleevec, but I have my doubts. I had a somewhat severe stroke last April without being on gleevec. I am still in cellular remission at this point. I have developed diabetes, (not related to the CML) so this stem cell news is something to consider. Thanks for the insight and sharing. Blessings, Susan (Indiana) -----Original Message----- From: Martin Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Mar 17, 2011 8:08 pm Subject: Re: [CMLHope] Kidney function Hi "V" I am not on Gleevec or any other drug because I had a bone marrow transplant 22 years ago this May. Since I had total body radiation and loads of chemo I became diabetic, and have had problems with my kidneys with rising Creatnine as well as my BUN levels over the years. I was in stage four failure and was starting to look into a kidney transplant because I didn't want to go through the riggers of Dialysis, and now that I am a chimera (meaning that ever since my bone marrow transplant my blood type has changed from O+ to B+ which was my donors blood type) and my organs still remain O+. Since a solid organ transplant must be the same as their blood type this would put me into a very unusual position because my blood is now type (B+ and my organs are still O+) . I then decided to try something new, it was stem cell therapy and after six and a half weeks I have been cured of my Diabetes, however my kidney problems are still there but I did notice that from my last two blood tests the Creatnine has dropped from 4.2 to 3,4 and my BUN level has also dropped from 65 to 55 in the last two weeks. The stem cell doctor told me that if the stem sell therapy was going to work then it may take about six months to see. So far I have been out of therapy for about two and a half months. However he did mention that what would happen first would be my Diabetes would get better, and it did. I no longer require any more insulin, so at least that part of it worked. I just saw my kidney doctor and he said that my kidney function has dropped from stage four failure to now being stage three failure. He was honest with me (my stem cell doctor) up front before I started this stem cell treatments by telling me that he has never done this before for kidney failure but has done it many times for Diabetes, and in a lot of cases if also had improved kidney function but there were no guarantees that it would work on me. This is because the damage to my kidneys was done by both the radiation and chemotherapy where the other patients damage was done by all of the drugs including steroids to try and keep their blood glucose in control. So, I guess that I will have to wait and see what happens... So you can see whether your on Gleevec or any other drug that is meant to help with CML there are always some "nastiness" that comes along with it. This especially goes for bone marrow transplantation. The bottom line here is that we all are still alive to do battle with whatever we have. I wish you the best of luck, and remember what I said about being alive, because every day that you are alive is a good day. My father once taught me many years ago, almost 22 to be exact, that every day is a good day unless someone close to you dies. At that time I was living in a small plastic bubble in a hospital for seven months. What he said just made me fight harder, and he was correct. GOD bless, and 18's Marty On Wed, Mar 16, 2011 at 9:37 AM, Victoria Reiter <[email protected]> wrote: Has anyone found that their creatnine levels have risen while taking Gleevec? I know this occurs when one's blood pressure goes up for any length of time but I'm talking about having normal blood pressure yet creatinine levels rising. VReiter -- [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 -- [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 -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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