Dear Susan, I am so happy for you being off of Gleevec and doing quite well. I hope that this goes on for you for many, many years.
I will pray for your mother-in-law to at least have an easy time of it, and that her suffering is very little. You do know that you are her guardian angel... *18's* to you both. Marty On Sun, Mar 20, 2011 at 6:07 PM, Susan Zimmerman <[email protected]> wrote: > 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. >>> 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. >> 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. > 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
