Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Hi , Welcome to the group and congratulations on your pregnancy. You can rest assured that you are going to one of the best places for CML treatment in the world. The doctors at OHSU are among the very top world wide and will be able to treat you no matter what situation you find yourself in. There are several different types of mutations each with their own set of characteristics. Some mutations respond to certain drugs better than others, some are harmless and some aren't really well understood. It would be helpful if you could find out the name of the particular mutation they found so that we can give a bit more detailed information. In the mean time, try not to worry too much. There are many members in the group who have been on the CML journey a long time with many ups and downs along the way. You're not alone. Tracey dx Jan 2002 > > My name is and I am a 35-year old CML patient. I was dx'd on > Nov. 2001. I was on Gleevec until 2005 and became intolerant. I was > switched to Sprycel and it worked beautifully. I was PCRU for 2 > years. With my doc from OHSU on board, we decided to get pregnant. > Things have not gone as well as expected. I am 6 months pregnant and > my test results continue to get worse. > > *1/2003 - .97 (Baseline) > 3/2008 - undetectable > 6/2008 - .0076 > 7/2008 - .085 > 8/2008 - .31 > > In my last sample, my doctor says they found a mutation. It is not > the T315 but a rather new one. He used the term " insertion mutation. " > > Can anyone shed light on this for me? I don't exactly understand > mutations but I need to know what is ahead for us. We are already > planning to have the baby early so that I can get back on treatment. > I just feel so helpless and my husband is worried sick. > > Thanks in advance for any information. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 , From what you describe, your cells don't have the typical " codon substitution " like the T315I. The " insertion mutation " is something that is fairly new. I have not seen too much in the publication database on this topic but I recall that the Physicians and scientists at OHSU know more about these mutations than probably anyone in the world. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Stacey Congratulations on the baby news What a journey you have had Highs and Lows - PCRU and then finding a mutation Question To become pregnant - did you have to go off glivec and then sprycel and go on another drug like interferon or some such thing Is that why the mutation has occurred and bloods going north. So what happens after the baby is born - you go back on sprycel ? I also are not that educated on mutations, however quite a number of young women in Australia have become pregnant and when pregnancy not going according to plan have had blood tests and found to have CML. The few that I have knowledge of all babies were born just chubby and gorgeous - all girls by the way - this year. I can understand that your husband is anxious - give him my warmest wishes - husbands are CML woman's greatest assest - mine is just a great support. Your guy sounds like he is going to be a great caring DAD. Tracey gave some great advise - Hope all goes well and let us know if the baby is a gal Could actually be a CML side effect Cheers Sue (Aussie) Quote Link to comment Share on other sites More sharing options...
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