Guest guest Posted February 21, 2008 Report Share Posted February 21, 2008 Donna, Please consider getting regular BMB's. My husband had mutations and weird things going on his marrow. He went from an ok response to blast crisis in two weeks. Very important to stay on top of things and prepared. We were so thankful he had already lined up his siblings for HLA matching and had a donor just in case. Unfortunately his " just in case " came very abruptly when he went into blast crisis. He is now on the eve of his transplant. Somewhere we never thought we would be. On Wed, 20 Feb 2008 16:50:23 -0500, Dorothy Emery <doemery@...> wrote: > Hi Donna, > > It sounds like the kind of mutations you are talking about is not a > mutation of the Gleevec binding site (ie T315I) but mutations of the > chromosomes other than the Philadelphia chromosome (ie you might have > 3 chromosome 8's instead of 2). Often patients get those 2 types of > mutations confused with each other but they do have different meanings > for treatment. The type you have might mean possible clonal evolution > and is often associated with the advanced phases of cml. Drug > treatments don't always work as well in advanced phases. You were > wise to see a specialist like Dr. Cortes (he is a top cml doctor) and > it sounds like he is on top of things by recommending you get your > siblings tested so you will be ready if you need to get a transplant. > If you are responding well to Gleevec and continue responding well you > will probably never need that transplant, but it will be good to know > whether or not you have a sibling matched donor because the extra > mutations might make your disease a higher risk than a more plain > vanilla type with just the Ph+ chromosome. If I were you I would > continue being seen & tested at MDACC as they have a very sensitive > PCR test and Dr. Cortes will know what you should do. You should > probably get a BMB more often than a more typical case as that is the > only way they can see if these extra mutations are disappearing or not > with Gleevec treatment (the pcr won't show that). That extra testing > won't be necessary forever but you are still less than a year from > diagnosis and this is a critical time for them to see how you are > going to respond. And please remember that there are patients who > have had transplants who are doing very well--it shouldn't be done > without good reason but there is still a place for this treatment. > I'm glad to hear you seem to be responding well to Gleevec (but it's > not clear from your post what your current remission state is). Best > wishes to you. > > Dorothy > dx 5/2000 > > On Feb 20, 2008, at 2:41 PM, donnaberry99 wrote: > >> -Dear All >> The posts on BMT have been a wealth of info as always. I too was >> recommended that this may be a route I would have to take by >> Cortes (MD )and to get my Brothers HLA in place. This info >> is all now at MD and waiting to be matched up. I wandered >> if he suggested this to me as I have 7 other mutations beside PH ones >> hence cloning evolution. Please let me know what you all think. I >> have already decided myself that I will just keep taking the >> wonderful Gleevec (have already reached PCR..dx May 07) until it is >> no longer working, then try another medication and only as a last >> resort a BMT (I am 48). >> BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have >> opted not to do and intend to get one on my DX anniversary instead. >> Thanks always for your wealth of information. >> Regards Donna x > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.