Guest guest Posted October 17, 2008 Report Share 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 Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2008 Report Share 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 Link to comment Share on other sites More sharing options...
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