Guest guest Posted October 17, 2008 Report Posted October 17, 2008 , That was my family's first reaction too. " Let the other guy try it first. " I was like - what if all the families are saying that? Who is going to try? I just thought it was kind of funny that I have *proof* the rest of the families are saying it! I am in Michigan - Ann Arbor isn't too far away. Perfect, they have a bunch of trials. So, I call my doc. The message I ended up leaving was I want to talk about getting into a trial. A nurse calls me back and has me call Karmanos. Karmanos says, " we are just your BMT specialists. " Basically, we don't really care about you getting into a trial. So, I call U of M and she takes my info and says she'll call my doc for records. She asks me if my doc knows I am calling about trials. I said " yes, sort of. " Anyway, yesterday I get a call from the nurse at my doctor's. She was very confused at why U of M would have this message on doctor's desk and why where they calling and why did I want to go there and blah blah. I stated everything in a strong voice. She sounded as if she were trying to intimidate me into not going anywhere else. But, I didn't budge. I feel really good about the conversation. So, now I will have to wait a few more days to see if U of M actually gets my records. [ ] Re: Toddler with CML > > Hi Shalyn, > I was on interferon prior to starting Gleevec and was so happy to get > off interferon, because of terrible side effects, swore never to take > interferon again no matter what. > I would like to see the published cases showing interferon and > Gleevec to be a probable cure. If the dose of interferon was low > enough and could work for people who have had good results with > Gleevec and be a probable cure, I would definitely give it a try. > Thanks, > M > > >> >> Have not hear much about this case - but if he was my child, I > would >> transplant if there is a match especially sibling. Otherwise, > after >> reading so many studies and wishing we had done so -- interferon > upon >> diagnosis with gleevec shortly after. The published cases of this >> shows probable cure.. >> >> >> There is no research of TKIs for the duration that this little guy >> would need it- so I would be curious to hear what the specialists > are >> recommending. >> -shalyn >> >> > Good Morning Everyone >> > >> > On the Australian Talkbloodcancer Bulletin Board a posting has > come >> > thru about a little toddler >> > >> > A little boy who is 2 years just diagnosed with CML >> > >> > Mum is trying to find out as much info as possible about babies > with CML >> > >> > I thought I would ask you guys, if you have heard of any other >> > toddlers with the condition >> > and if so, do you know the experience of those families. >> > >> > Little fellow is on glivec >> > >> > Uncharted waters if may seem. >> > >> > Thanks >> > Sue (Aussie) >> > >> > >> > >> > >> > Quote
Guest guest Posted October 17, 2008 Report Posted October 17, 2008 Tammy... Good for you! Be strong, ask questions and always feel free to change your mind. Choosing a medical team is everso important. Research is critical and you must be your own best advocate! Great job! Sent from my Verizon Wireless BlackBerry [ ] Re: Toddler with CML > > Hi Shalyn, > I was on interferon prior to starting Gleevec and was so happy to get > off interferon, because of terrible side effects, swore never to take > interferon again no matter what. > I would like to see the published cases showing interferon and > Gleevec to be a probable cure. If the dose of interferon was low > enough and could work for people who have had good results with > Gleevec and be a probable cure, I would definitely give it a try. > Thanks, > M > > >> >> Have not hear much about this case - but if he was my child, I > would >> transplant if there is a match especially sibling. Otherwise, > after >> reading so many studies and wishing we had done so -- interferon > upon >> diagnosis with gleevec shortly after. The published cases of this >> shows probable cure.. >> >> >> There is no research of TKIs for the duration that this little guy >> would need it- so I would be curious to hear what the specialists > are >> recommending. >> -shalyn >> >> > Good Morning Everyone >> > >> > On the Australian Talkbloodcancer Bulletin Board a posting has > come >> > thru about a little toddler >> > >> > A little boy who is 2 years just diagnosed with CML >> > >> > Mum is trying to find out as much info as possible about babies > with CML >> > >> > I thought I would ask you guys, if you have heard of any other >> > toddlers with the condition >> > and if so, do you know the experience of those families. >> > >> > Little fellow is on glivec >> > >> > Uncharted waters if may seem. >> > >> > Thanks >> > Sue (Aussie) >> > >> > >> > >> > >> > Quote
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