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.."

Being Antisocial?

Antisocial, the definition in the dictionary says, "hostile or harmful to organized society; marked by behavior deviating sharply from the social norm." Can this be me? Well, I guess my blood is according to the doctor today. It has to do with my one enzymes or chromosomes and how they are not playing well with the others and pushing the others around and taking over the place. This is how Dr Gingrich sort of explained my leukemia. I really enjoyed our doctor visit to Iowa City. He is a very nice man with a lot of information but easy to understand in the way he explains things. If he wasn't in Iowa City I would probably continue to see him. Dr Sangha is great but it was just easier talking and understanding Dr Gingrich. He was full of information and there fore if you want all that you will have to tune in possibly on Monday when Craig has the chance to get more in depth with the information we received. (I think Jody did a great job of explaining, and I don't think most people want more details or a history of the disease and treatment options as they have changed over the past 12 years. But his information did give us greater understanding in what we know and how comfortable we are with this) I can tell you that he thinks I am doing great and at this point doesn't see any reason why I should have to go through the process of testing for bone marrow transplant. We asked him if it did come down to it and the meds weren't working how long would the process take. He said it would take about 2-3 weeks in regarding to testing my siblings and the possible match there. If none of my siblings were a match then about 6-8 weeks to find a universal match. To us that just didn't sound too bad. Much quicker then we had envisioned. So I did not have to have any test done today. HURRAY!! One less poke.

We asked what is considered remission. He said there are basically three stages and here again is where I wont be able to say it all right. The first stage has to do with the blood. (hematological remission) It is is no longer detectable through the blood tests. The next stage has to do with what is called the Fish test. (Some kind of physic- remission) (Don't know if it is spelled fish or phish.) This has to do more with the, I think, chromosomes (just a more detailed test) and then the third stage is another test (PCR test that looks very closely at a large group of cells to look for any Philadelphia chromosomes in the blood) where they look at things even smaller and it is no longer detected. This whole process could take up to a year or more. (There are goal time frames that they would like to have Jody hit certain levels by) He did inform me again as Dr Sangha has said this is something I will have the rest of my life as well as being on Gleevec.

Dr Gingrich talked to us for about 45 minutes. How many Dr do that anymore? We were able to bring home a lot of information specifically about CML and so will have a lot of reading to do this weekend. ( Good thing to take along to Nathan's basketball, tournament tomorrow.)

So that is the very basics of what we found out today. My appointment was at 10:30 and we were out of there by 12:30. Not too bad I thought. Again, Craig will possible write more in detail about the information we received today so stay tuned. He has a busy weekend and just didn't have time to write today but I didn't want to keep you all wondering.

Another quick update. Continue to keep my brother in your prayers as I found out on my way to my appointment this morning that he was not able to have his surgery do to the fact that the hospital didn't have a certain instrument that his Dr would not work with out. So after already having his sinus's washed and been on IV and basically ready to go they told him it was off. What a major drag. So keep him in your prayers as well.

When I got home from my appointment I was able to take a few minutes and read from my devotional, "The Upper Room" and I have to share what it said. It was titled Six Weeks and the verse was from Exodus 16:6-7 "Moses and Aaron said to (Israel),"...You shall know that it was the Lord who brought you out of the land of Egypt, and ...you shall see the glory of the Lord." After the Hebrews crossed the Red Sea, "the pople feared the Lord and believed in the Lord and in his servant Moses. (Ex 14:31) The writer writes about how when he was a teenager this story seemed to go down hill from there. He got tired of the peoples whining and lack of faith. He found it hard to believe that six weeks after the great Exodus, people began to doubt God and to think the Exodus had been a mistake.

As the writer grew older the story became more believable. He saw how quickly he himself could fall back into doubt and whining after God did something wonderful in his life. From what he's observed, six weeks is about the average life of human trust. God responded to the Hebrew's ingratitude--not by taking away from them but by increasing their blessings and working additional miracles. He didn't punish them like we would think. He gave them more blessing and miracles. Wow! God's presence was obvious.

It has been five weeks now for me with this new diagnosis. Do I consider it "something wonderful God did in my life?" Well, in a way yes. He planned for me to have this physical and for the doctor to do the right tests and find this early. That is something wonderful But am I still trusting God or am I falling back on my doubt and whining? I have to say that I probably have been doing the later of the the two somewhat. There are parts of me that think " How can I be so fortunate? Surely having cancer is more difficult then this. I really haven't had any real problems and complications."I have heard other cancer stories that have not been so good. I start thinking things will surely get worse rather then trusting that God had it planned this way all along. I think I have maybe even whined just a little about some of the small things that I have had to deal with, sore muscle and major leg cramps. I believe that this whole thing has just been an eye opener to what God has in store for me and how much He is in control of my life, not my worries and anxieties. He too has blessed me during this time and is working miracles in me. The writer ends the devotional with this prayer which is my prayer to all of you: "God, thank you for remaining faithful even when we doubt, for delivering us from bondage, and for blessing us with all that we need. Amen.

First Cancer Center Visit

Well it has been two weeks now since Jody’s diagnosis and although not a lot has changed it feels like the world has changed; everything looks different. We walked into the “Cancer Treatment Center” for the first time. It was harder for both Jody and I than we thought it would be. Just putting the title on it once again brought the reality fresh into the center of our reality. We felt out of place, uncomfortable, like everyone was looking at us. We were well under the age of others around us, and although cancer is not fair when it enters anyone’s life it seems disproportionately unfair when one is so young. Afterwards we went out to eat at “Red Lobster” and then and new pair of pants for Jody at Wal-Mart. (All the While I was on the phone with Insurance – bleh)

Here is the basic update info for all of you who have been holding your breath.

We now have an insurance case manager who is assigned to us. This means that as we have questions she is supposed to help us and will be the one to make decisions about extra treatment and care. She has been on the Gleevec now for 5 days. She has virtually no side effects that we have noticed. I am the one sick from already meeting our yearly family pharmacy deductible. ($5,000) (Laugh for me – I can’t yet)

Her white cell count has come down a lot – only 185k now – this is good, but she still has a long way to go to get to the recommended 5-10k. Dr. Sangha said she is 98% abnormal – I guess we all had some suspicions about that. (laugh with me this time) This means that a majority of her blood is composed of the Philadelphia chromosome that is the key to identifying CML.

We asked a lot of questions

How common is this? - Not very

Do you have any other patients? - Roughly 5-6 in the area

Working at the school? - Just wash hands regularly.

How to read blood count numbers? - Blah, blah, blah – funny thing is I think I got most of it

What to expect and plan for in the months ahead?

First two months just getting her levels back to normal. Sometime after that we will get a consultation in Iowa City for info about Bone Marrow Transplant. As long as the Gleevec is keeping her cells in check this is probably not the course of action to pursue. Possibly this will lead to seeking matches through siblings for future.

How often will we need to see you? - Every week in the clinic for blood tests – keep track of levels. Then once per month to consult with him about any changes we notice or the blood levels indicate.

Can we get copies of all Jody’s tests? - Yep – and they are on file.

Many others…

We do feel comfortable with Dr. Sangha and what we are learning about Jody’s condition. We are “Living Victoriously” believing that we have already overcome this. By looking at Jody you would not be able to tell that there is anything wrong with her. She is coping with all this very well, but still fights her emotions on occasion when the overwhelming reality and her imagination gets the better of her. We have been walking together on a regular basis in the mornings and our nightly prayers have become an essential part of the day. I get to cuddle more than ever, and she just treats me like her big teddy bear. You know sometimes it takes devastating news to remind you how much you love someone. I pray you all will take a moment to tell the people in your life that you love them, and remember Jody and I love you too.