Going Down!

Going Down?!

Ok, if you aren’t confused yet you may be after reading this. First, guess what I finally received last week in my email. I got a response from Dr Gingrich finally about my test results. Here are his exact words he sent me: “Your mutation testing came back negative – no T315i or other detectable mutation. The PCR test result was 0.00156 [this number is not to be compared numerically with your prior numbers] which roughly speaking equals 156 copies of the Philadelphia chromosome per 100,000 copies of a normal ‘reporter’ gene. In other words Gleevec has produced >100-fold drop in the Philadelphia which is not bad but is also not zero, which is our goal. There are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

I would suggest our plan be to continue with Gleevec, recheck the PCR in 2 months from your last visit and if still elevated, consider moving over to the Tasigna clinical trial.

Ok, so if you don’t understand that, which at first I didn’t catch either, my numbers in my PCR are actually back down. (This is a good thing, I know very confusing, up and down which is good right?) This means it seems that my Gleevec is back to working. So why was it up before? Don’t know right know. Like Gingrich said, there are other mutations that can’t currently be measured that could cause the Gleevec to produce an incomplete response.

Now last Friday I went and saw Dr Sangha and he basically said that he wasn’t sure if I would be able to be on the test drug if it seemed my Gleevec was working. So where does that leave me? Stuck in an elevator listening to music. Basically waiting till I see Dr Gingrich on December 14^th and then probably waiting after that too until I receive my test results that we will take when I am there.

Is staying on the Gleevec a good thing or would it be better to go to the trial drug Tasigna? Well, If I were to go on the trial drug most everything would be paid for beings it is a “trial”. They would pay for my visits, my test, and my drug. Now if the Gleevec is working that is great and yes it would probably be good if I just stayed on that but that means having a big deductible to meet the first of January. So as usual it is all up to God and what he wants. I know that and always have. I just don’t always like waiting and wondering.

I am finding that I am getting a little more emotional as the holidays come. I keep thinking back to that dreaded phone call almost a year ago and how things could have been different for me right now. I have a lot to be thankful for this Thanksgiving. I can’t say that I have changed my ways like I probably should but I am definitely more thankful for what I do have, especially family. Remember that when you are with family this Thanksgiving, you never know what tomorrow holds. Be sure to let those around you know how much you love and appreciate them.

The Waiting Game

I know many of you have been wondering as well as I about what I have found out about test results. It will be three weeks Monday since I saw Dr Gingrich and I, to my knowledge, have not gotten any results for in regards to my T310I test. I have gotten mailings from them with other test results but not what I am wanting. Guess things with Dr Gingrich isn't any better then Dr Sanghas. I called them last Wednesday asking for results but never heard back. What do I do. Is this something that isn't suppose to be a big deal.? If there is a doctor reading this, please explain this to me. What is it with getting test results back? I guess at this point we will just assume that things are just fine and that the test came back OK and not having the T310I and will be starting the new drug in the new year.

I am still feeling good. I had a pretty good cold earlier this week, thanks to my husband who had it the previous week, and still kind of fighting that. My daughter Hanna has been out since Wednesday with some type of viral thing. She has had a fever all week. Started out at 100 and then after a couple days jumped to 103 almost 104. This morning she finally has a normal temp but had that for a while yesterday too then shot back up by supper. She is really wanting to go to the UNI game we have tickets for this evening but still not sure about that. So far Nathan hasn't had anything. There are about three different things going around school right now and we are wondering what actual flu season will be like.

Both kids are done with soccer. Last Saturday was the last of the fall games. Now Nathan started basketball this week and Hanna starts next week. It is hard to believe that the first trimester of school will be over in a week. On November 18th my Granny celebrates her 103 birthday. Wow! We pray she has a good winter.

Well, since the sun is shining and it has actually been dry Craig is wanting to get the playground equipment stained so that is what we are about to do. Nathan is working at a friends house who bought him last year at the churches Lords Portion sale. Nathan sold himself for work to earn money for the youth so today is finally the day. Sounds like he will be helping take down a old barn. Got a lot to do before the game. Thank you all for your continued support and prayers. You know, I was hoping by now I would be able to say I was in complete remission but ya know, I am OK with things and how they have come about. As I was looking for images to add I thought about a game of chess. That is what it is like right now. Waiting for my opponent to make the next move. Whether that opponent is the Doctors or God I don't know. It is showing me just how much I really need to be patient and rely and trust in God and his timing. This is something that is a daily thing but think this next year God could really going to be showing for it to me even more.