Nilotinib

Nilotinib

Pronunciation: (nye-LOE-ti-nib)
Class: Protein tyrosine kinase inhibitor
Trade Names:
Tasigna

As of Monday, March 29th I started the new test drug Nilotinib. First I had the usual done of weight check, temp and blood drawn. Shortly after that I was called back to a hospital like room where several EKG's were done, and I mean several. (We had a few technical difficulties.) So what was suppose to be 3 EKG's turned out to be 5 to start out with. At least I was laying down and resting. My results looked pretty good. Little questionable on one but like Karen says, she is not a doctor and doesn't read them for a profession so she went to have Doctor Gingrich double check them. About 5 minutes later she called down to the nurse and gave the OK. That's when I took my three tablets. One 200mg and two 50mg. I was to come back two hours later which was 12:50. Now I had been fasting since about 6:30p.m. the night before. I couldn't believe how much I missed my cappuccino in the morning. I still couldn't eat till an hour after taking the pills so we walked around and checked out the gift shop then found a place to sit and we both read till it was time to head back. During this time however my husband decided to indulge himself with a nice flavorful latte. "How Rude!"

Back we went at 12:50 where I was taken back to the room again for three (actually four) more EKG's. All looked good and i was feeling good too so was free to go. That was after I signed papers for reimbursement for millage and lunch. That will be a nice part about the study. They don't cover all the millage but every bit helps.

I go back again next Monday for the same routine. If things are still looking good I wont be back again till April 26th.

Some of the things I am to do while on this Nilotinib are: fast 2 hours before taking pills and 1 hour after taking them. Water only during fasting. During study I should not consume Seville oranges or juice, grapefruit, grapefruit juices or supplements, Star fruit or juices, or Pomegranate or juices. I also need to notify Karen if I have a sudden weight gain of 5 pounds or more. I am hoping for a 5 pound weight loss would sounds good.

The reason why all the EKG's is just precautionary. As Karen says, " I know this is a lot of heart testing but we don't expect to see any problems. We just are careful when starting on the drug as there have been a few cases of heart problems with the drug in the past."

One other prayer concern we have. We have found a house we all really like and put a bid on it last Monday. However, the previous owners owe more than we are offering. That means that the bank gets involved and it is called a "short" sale. Craig talked to the Realtor again Monday and the owners where suppose to be presenting the bid to the bank yesterday. If I understand things right the bank will have to get together to decide if they will take our offer, counter it, or just forget it all together. We really like what this house has to offer and would really like to get it. So please pray that if this be God's will this will happen sooner rather then later and if not to let us know sooner then later so we can find another option. (If we can act before April 30 we can get the new home owners $8,000 tax credit)

Take time this Easter to spend it with the people around you. Isn't that what the disciples did? They were together comforting each other after what had happened days before. When the women came in proclaiming that the heavy rock had been rolled away and Jesus was no longer in the tomb there was much doubt and disbelief. It wasn't only Thomas that was disbelieving. In Matthew 24:11 it says that they did not believe the women. Even Peter had to go to the tomb to see for himself. Jesus himself even asked the disciple "why do doubts rise in your minds?" In Luke 20:29 Jesus says, "Because you have seen me you have believed; but blessed are those who have not seen and yet have believed." Go out this Easter believing and proclaiming the good news that Jesus is not dead but lives with the Father and the Holy Spirit. Death could not hold Him and because of Jesus, death cannot hold us either. Praise God!

I Had A Long Take

Do you know the song from Alvin and the Chipmunks, "Had a Bad Day?" Well, I cant say it was a bad day really or a good day but it was a LONG day. Craig and I had to be in Iowa City at 9:00 for my first set of test. First I had three EKG"s done each 5 minutes apart. That all went pretty smoothly. Got in pretty fast, she got me hooked up and ran the first of the three and then drew my several vials of blood then the other two tests. Was done there about 9:40 and my next appointment wasn't until 11:45 but thought we might as well go up there and see if we could get in sooner. The receptionist gave me a pager and we went back downstairs to get a couple lattes. As we were ordering the pager went off so back up we went. There I had the echo cardiogram done. Craig thought that was pretty cool to be able to see my heart and it pumping. To see the Left and right ventricles and atrium, the aorta, even having it colored red and blue and see the blood going in and out and really hear it. I asked about getting it on DVD and she said it was possible but then she didn't give us one. Guess I was specific enough. Thought it would be neat for not only my kids to see but the 4th and 5th graders at school are learning about the heart. Maybe if I have another one in one of my next visits I will ask again.

So not it is like 10:50 and figure my next appointment isn't until 1:00 so could catch and early lunch and not have to worry about hurrying. We went to a new place to us called the Spartin Gyro. It was really good, just a little place but you get A LOT of meat for your money. There was so much meat in our gyros that we took some of it out and we figure we have enough to make two gyros tomorrow for lunch.

Then back to the hospital early and we actually got in pretty fast too being my appointment wasn't till 1:00. We didn't see Dr Ginrich this time. Just Karen and Karen. Karen the PA came in and talked to us and asked what we used the last time I had my bone marrow done for pain. Was it just the epidural or a morphine pill? Craig thought just the epidural but I was sure I had taken a pill and after a while Craig thought I had too but granted neither of us was positive. It was all such a blur. So I was given a morphine pill and then had to wait 30 minutes. Karen came in and she proceeded to numb my hip. THAT HURT! She then went right in with what Craig calls the "ice pick." At first it didn't hurt so much. She kept saying I had a thick bone. That meant she had to "pick" a little harder. I could feel when she did aspiration which she had a hard time getting enough marrow because of my think bones but after three times she thought had enough and I had definitely had enough! I know the last time when I had the bone marrow biopsy I said I would do that over going to the dentist. Well, not so sure would be true for this time.

We had to wait for Karen to come back to talk to us so I was put in a wheelchair and wheeled out to the waiting room. I was feeling pretty woozy, like if I moved my head to fast I would get dizzy. After our chat Craig wheeled my back to the where I had my EKG at the beginning of the day for another round. By the time that was done I didn't need the wheelchair anymore and was feeling pretty good. I was wiped out and ready to go home. I thought I would sleep in the car but I just couldn't.

I should be hearing back from Karen about my test results and if everything looks good I will go back on Monday to start the drug.

Catch Up and our BIG NEWS

Where you thinking I feel off the face of the earth? Nope, I’m still here but not really much news. After my appointment in January and my results being 0.00058 the doctor decided that since we were close that we would give my Gleevec 8 more weeks and then have my BCR drawn again. Well, the eight weeks was last Monday, March1. I really like going to Iowa City but when you know all you are going to really have done is your blood drawn it is hard to be patient while you first have your blood drawn, then a nurse takes you and checks your weight, B/P and Temp. Then you are taken back to a room where you wait and the Test Drug rep, Karen, comes in for a short talk. Basically saying we will wait the results and go from there. Then the PA, another Karen, comes in and asks you the same questions, “How are you? Feeling tired, any swelling” Then checks your spleen and your legs for swelling and then leaves and you sit there for Doctor Gingrich to come in and really not have anything to say. If you ask me we could at least skip the Doctor visit and just talk with the PA. If it is a follow up visit why not just skip the doctor? Anyway, I really like Dr Gingrich but don’t HAVE to see him everytime.

Ok, so today I got a call from Karen the Test Drug Rep saying that my results from the BCR were exactly the same as 8 weeks ago. That isn’t good really. Not bad but not good either. We really should have met my goal and been in remission about 6 months ago. So, obviously my Gleevec is not going to get me to that final point. I will now be going to Iowa City the next three Mondays for appoints to get started on the test drug. I will stay on the Gleevec for about two more weeks which works out good I think with what I have left. Then I will be off it for 3-5 days before starting the new drug. I am excited about starting this new drug. I hope that it won’t upset my stomach like the Gleevec and I don’t think it will. And like I said before, being on the test trail I will get close attention. Not that I am worried about anything but it will be a nice precaution. But the big bonus is that Karen the Test Drug Rep is really good about keeping in touch with me. I LOVE that. We all know how well Dr Sanghas office was at getting me test results and how annoying that was.

We brought the kids along this time. We told them that we needed a family day since we had been so busy with going to Jerusalem and Craig being in the play Curious Savage. We just hadn’t had much time together. At least that is what we told them. Which to a degree was true but we did have other alternative. On our drive to Iowa City we asked the kids why they thought we brought them along. Hanna truly did think it was a “family day” but Nathan had a feeling it was something else. He was concerned that it had something to do with mom and her doctor’s appointment. That things had changed and we had news in regards to that. We reassured him that that was not the case. Then we played 20 questions. First they figured out the area we would be headed to after my appointment, which they narrowed down to the Des Moines area. Then they had to figure out why. They both had no clue. I told Nathan this was something he had been talking this year and actually just last Friday. That really puzzled him. Eventually, it got to this. We will be moving. Yep, the time has come. The kids reacted the way we expected. Hanna cried and Nathan was giddy. They had the rest of the day to ask questions.

We ate lunch at Old Chicago’s, then went to my appointment. We actually got right in and got through the whole visit pretty quick. Got in the car to head to Urbandale and about 15 minutes out I got a call on my phone. It was Karen saying that I had needed to get more blood drawn because they hadn’t taken the right stuff, could I come and have that done. It wasn’t her fault. She had told me at the beginning of my appointment but we had forgotten in our excitement. So back we went. Now we were going to be late for our Urbandale appointment. Ended up we were only 10 minutes late.

The kids got to meet some of the church people and the church. They love the church. The name is New Hope Methodist. Of course it is somewhat bigger then where we are now. There is a rec. room with basketball and volleyball available. They have three services, two traditional and one contemporary with a Praise Band. Craig will be working with the senior pastor and preaching once a month ,but mostly working on getting out into the community and building a core group of people for this new church start.

We weren’t able to drive around Johnston because by the time we were done at the church it was 7:30 and we had an on hour and half to drive home yet. The kids had to not tell anyone for a whole week. They did really well. We would talk about it at night and on the way into school and then they would have to keep it at secret. Sunday, the announcement was made in church. Boy, was that a hard day!! Tears were shed. Thankfully the announcement was at the end of church so I was able to play for the whole service with my eyes fairly dry. They are sad to see us go but understand I think that this is what we are meant to do.

So that is our BIG NEWS.

As I was writing this I see that Karen has emailed me with my appointment information. On Monday I will have to be in Iowa City at 9:00 for blood draw and a couple ECG’s. Then 11:45 I will have an echocardiogram. At 1:00 will be my bone marrow biopsy. Hope they do as well as Dr Sangha did a year ago. I will have high expectations. Of Course a year ago I was in shock too so was kind of numbed by all that. I will continue to take my Gleevec til Wednesday, March24. If everything looks good from these test then I will return the following Monday for more bloods draws, ECG’s and take the first dose of the Tasigna. Then repeat blood and ECG’s. Return again April 5^th for Blood draws and ECG’s. They don’t expect there to be heart troubles, it is all just precaution and since I am on this as a test I will be watched carefully.

Ok, now you are all up to date and know what I know pretty much. Aren’t you lucky.Keep us in your prayers not only as I start this new drug but as we start a new adventure in our lives. We are excited but a little leery too as to not sure what to expect. We truly believe that this is what God wants us to do and will trust in Him to guide us through this adventure.