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. 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