Hi Dane I am so envious of you meeting Jerry. I have only talked to him over the internet, but that was wonderful too. Hoping once Rich has success on BMS (which he starts next week in Mannheim under Dr Hochhaus) that we will be able to visit the US and top of my list will be visiting with Jerry..... Glad you are progressing so well. Best wishes Annette _____________________________________________ --- In [email protected], [EMAIL PROTECTED] wrote: > > > I was waiting in the ATC hallway this morning when Jerry Mayfield > came up and introduced himself to me. What a pleasure it was to meet > the great CML warrior. It was at his website where I first learned > about the existence of STI571 when I was still walking around in an > Interferon fog. It could be said that Jerry is one of the people > who saved my life. > > We discussed his case and how he was doing on the BMS drug. I'm > glad to say that he is still doing great and remains in CCR. > Considering the rough road this man has been down, he deserves it. > I believe he is still with us because of his unwillingness to give > up. > > We discussed my tranpslant recovery for a while and about the "old" > pre-Gleevec days, and then he told me some very interesting news. > > Jerry has a friend (and has news of others) who have had transplants > (related or unrelated donor I do not know). These patients had been > several months out of transplant when tests came up with minute > traces of the disease. > > He said that Talpaz put them on the BMS drug and shortly after that, > both patients had ****no morphological evidence of the disease****. > > Jerry mentioned that Talpaz was excited about the drug's potential > in catching lingering mutations in post transplant patients and > thinks that for some patients, this could be the coveted "one-two > punch" treatment. I will be sure to discuss this scenario with my > transplant onc the next time I see him. > > We then discussed the stigmata associated with the dreaded Bone > Marrow Transplant. Jerry reminded me of the great strides have been > made in BMT science in the past few years and that the BMT may still > play a crucial role alongside gene targeting therapy, rather than > becoming obsolete because of the same. > > I can use myself as a good example: > > Diagnosed in early 2000, Gleevec was around but still in clinical > trials. I started the current first line treatment of INF/ARA-C > therapy which began to ravage my body. I also started trying to get > into STI trials but was rejected twice. By November, I was > approaching blast phase and very very sick. My onc sent me to > Houston for a transplant. > > While there I pressed my team for admittance to an STI trial, > knowing I was extremely weak and might not stand the rigors of the > BMT. (Important to know that back then, I would have had radiation > treatments as well as chemo!). The doctors heard me and found a way > to get me into an STI (Gleevec) trial, and I flew home the next day > with a bottle of pills. I do not believe that I would have survived > a BMT in 2000. > > 1.5 years later, I was in CCR and feeling great. Thank God for > Gleevec. Life went on nicely for another 3 years and then a routine > test showed I was becoming Gleevec resistant, and I ran back down to > MDACC as fast as I could. > > For reasons well discussed previously, my team decided a transplant > this time around was the best course of action. I went through it > (no radiation due to new chemo protocols!) and as of this writing, > 40 days out, I feel better than I did while in remission on Gleevec, > and waiting for the results of my first post transplant biopsy. > > The difference is, this time I went into the BMT while still > relatively strong due to my 4 years of Gleevec therapy. I was still > in hematological remission and only 20% PH positive versus 100% PH > positive and getting ready to blast. I went in this time weighing > 230lbs....when I last faced a transplant I was an emaciated 144lbs. > > So it was Gleevec that first brought me back to remission from near > blast phase and kept me there for several happy years. When I > relapsed, I had the luxury of being in excellent health and physical > condition to withstand a BMT, which seems to be grafting nicely. > > Now, if the BMT does not clean me out all the way, there are several > new drugs on the horizon that have already shown promise > in "finishing" the job in the post BMT phase. I may be able to > utilize these new drugs as well, if needed. There is a very good > chance that they may be not needed at all. > > Perhaps such a three-pronged treatment plan would be a viable option > for some patients in the future. Ah...but I digress. > > It was wonderful finally meeting Jerry today, and I was overjoyed to > find him looking so happy and healthy! > > Here's a snapshot from today. > > http://www.fototime.com/B3EA513E1A86A20/orig.jpg > > Regards and prayers > > dt ------------------------ Yahoo! Groups Sponsor --------------------~--> Help save the life of a child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/0iazvD/5WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. 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