Guest guest Posted February 22, 2008 Report Share Posted February 22, 2008 Hi , Actually Cam got his stem cell transplant today. Very exciting. Now on the the road to recovery. If you are interested check out our blog at www.camcor.vox.com Coralee On Fri, 22 Feb 2008 00:09:47 +0000, Cervera <weez_555@...> wrote: > > Coralee: > and I have been thinking about your family, if I remember right, Cam > is doing a BMT very soon--correct? > We keep your family in our thoughts and prayers.... > Please keep us posted on his success! > > Regards > > > > @...: coralee.williams@...: Wed, 20 > Feb 2008 21:07:59 -0700Subject: Re: [ ] Re: BMT- Donna > > > > > 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>>> [Non-text portions of this > message have been removed]>>> > > > > > > > _________________________________________________________________ > Climb to the top of the charts! Play the word scramble challenge with > star power. > http://club.live.com/star_shuffle.aspx?icid=starshuffle_wlmailtextlink_jan > > Quote Link to comment Share on other sites More sharing options...
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