T315I

So, I had my appointment today at the University of Iowa Holden Comprehensive Cancer Center. I thought it would be nice to look it up on line and find a picture for you and found out that it was ranked 27th in America's Best Hospitals in this specialty area. Pretty cool. Actually, several specialty area's were ranked quite high. I am very confident that I will be getting good treatment there, even if I have to wait after I check in for over an hour. So my appointment was at not a "quick" visit. I sat in the waiting room for over and hour and then again in the exam room for probably a half hour but what can ya do?

This is Roger D Gingrich, MD, PhD. He is VERY knowledgeable in regards to Oncology and Blood & Marrow Transplantation and even better, is personable. He explains things so simply and in terms I can understand. For example, he explained one thing to me about my blood test he was doing by comparing it to the TV show CSI. I loving watching CSI. (Not the Miami ones though, that is way to soap opraish.) He just has a way of bringing it to your level. Something else about him is that he looked at me when he was explaining things and not just at Craig. (Dr Sangha has a tendency to talk just to Craig) So here is what I found out.
He drew some blood to test two things. First he drew for what is called a PCR. (Don't ask me what this stand for) but it looks at my blood on an even smaller scale then what my FISH tests have. It looks at more of my blood rather then just a drop of blood. The second test he drew for was to check for a mutation in my blood called, T315I. Here is a definition of it: Definition: The T315I mutation, associated with chronic myeloid leukemia (CML), alters the shape of a certain enzyme called ABL. The altered shape of this enzyme causes resistance to imatinib (Gleevec), usually an extremely effective drug for CML. Accounting for 15% of Gleevec-resistant CML cases.

Now if my test for that comes back positive for having T315I no medication will help control my CML and I will have to have a Bone Marrow Transplant. If the test comes back negative then I will more then likely start taking a drug called Tasigna. I would be a research subject where they would be doing an exploratory study, because I have CML in the chronic phase, achieved a complete cytogenetic response while taking at least 400 mg daily of Gleevec; however had a suboptimal molecular response. Tasigna is approved for treatment in adults who are resistant or intolerant to prior treatment such as Gleevec. Tasigna targets the same protein as Gleevec but has a stronger inhibitory effect on the protein then Gleevec. About 2700 people have been treated with Tasigna in controlled clinical studies. By the sounds of it Tasigna may be taking the place of Gleevec in the next year or so. I can not start the study however till I have been on the Gleevec for a full year so will not be able to start taking it till January. The good thing about being on the study would be that I will be monitored much more closely then if I was just put on a different drug. This would be a good feeling. All the test run and the medication would be free. I would have to be on the study for 5 years which is not a big deal as long as the drug is working (and if it didn't I would be taking off it of course) I have to be on some drug anyway.

I have an appointment to see Dr Gingrich on Dec 14th. I see Dr Sangha this Friday to update him on what all is going on and check base with him. And that is where I am at. I am very tired and really need to just go to bed now (It is 10:26) and just give myself a day or two to let this all sink in and do some more reading and research. I don't know how long it will take to get the test results back but usually it takes a week. I will of course be keeping you all updated as to what I find out when I find out. Thank you all for your thoughts and prayers. I couldn't get through all this with out first of all my husband who is with me every step, walking right beside be, my family and my friends. It means a lot to me.

Just Keep Swimming!

I love the movie, "Finding Nemo". There are such wonderful characters. My favorite would be Dori with her carefree attitude. Just look at her. They are about to have an encounter with a SHARK! Look a the look on her face. No worries, no fear. Poor Marlin is about paralyzed. Now granted, Dori cant remember something she said 10 seconds ago but hey, would that be all that bad? Think of the things you wouldn't remember. All the bad stuff, deaths, sicknesses, friends that have hurt you. But then, think of all the good things you wouldn't remember. Your first love, your wedding, the birth of your child, the wonderful memories of friends and family, trips you have taken. What a lose. I would hope all the good would out-way all the bad and the bad wouldn't seem, so bad.

There is a line in the movie where Dori and Marlin are searching for Nemo and Dori is singing, "Just keep swimming, swimming swimming, Just keep swimming..." Well, that is kind of where I am at right now. Swimming. Not in a sea of dis spare but just out there swimming. Not sure as if I am as carefree as Dori but I'm just swimming and am keeping swimming. As I mentioned in my last blog, my Gleevec just isn't working quite like its suppose to. It is keeping my white count down but when you look at a smaller molecular level my counts are starting to go back up. (Not a good thing) Again, it is nothing we are worried about since it is at such a small level but still cause for concern and possible different action.

Well, on Tuesday I finally heard from Dr Gingrich's office, but I don't have an appointment until October 19th. I am to not take my Gleevec that morning, I assume they will be testing my levels again like Dr Sangha did along with other blood tests. I will also be having another Bone Marrow Aspiration. I always thought that my next Bone Marrow would be to diagnosing me being in complete remission. So that is where I am at. In a big sea of time singing,"Just keep swimming, swimming, swimming.."