News Update

This is a news update...the results are in...OK, OK don't freak out or get excited. I got your attention though. Hahhaa. Ok, so received some of the test results from my last visit to Iowa City. My count has gone up just a little but they are calling that stable from the last visit 3 months ago. Here is what Karen emailed me, It was 0.13% in July and 0.20% now, so still lingering just above that 'major molecular response' which we would like to see. I suspect Dr Gingrich will want to increase your dose, but we do need to wait for the study PCR results first. I am currently at 300mg and so they would put me up to 400mg. I don't know what the highest dosage is on this drug (Tasigna/Nilotinib).

Now at the time of my last visit my Liver count was also elevated, but it wasn't sure if it was due to the Tasigna medication or the Prednazone I was taking for my poison ivy so we had them rechecked Monday here at my clinic. I guess Karen got the results today and again this is what she emailed me today, Your liver counts looked pretty good today. The total bilirubin was still up a little, but the others were normal. The rest of the results should be in by next week sometime I think. So until then that is all I know. Right now it is looking like I will have to up my medication. Sure hope it continues to not effect me in any way like it is now. Did that make sense? In other words it isn't bothering me now to take it and I hope uping it still wont bother me.
I am a little concerned that we cant get it past this last little bit. Generally by now I should be in remission. I am always know I was different and did things a little more complicated. The fact that it has gone up, even though it is just a little especially when you are looking at it on a molecular level, worries me some too. I do wonder what if they cant get me to that last level. Can I stay at the level I am at and be ok and for how long? Or will the stupid molecules take control again? As it says in the bible: Matthew 6:25-34

Do Not Worry

²⁵"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? ²⁶Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷Who of you by worrying can add a single hour to his life^a]">[a]?

²⁸"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. ²⁹Yet I tell you that not even Solomon in all his splendor was dressed like one of these. ³⁰If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? ³¹So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' ³²For the pagans run after all these things, and your heavenly Father knows that you need them. ³³But seek first his kingdom and his righteousness, and all these things will be given to you as well. ³⁴Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Much Love & Itching!

Well, it's been awhile since I have written but this summer has been busy with the move and all but you can hear all that in the "hope to be" Christmas Letter. ( I can dream) Had appointment in Iowa City today. It's a little different driving from this direction. Takes about the same amount of time,maybe 15 minutes more, but it is worth it when you like the doctor and people there, even if it may seem a little extreme. Hence the title "Much Love".

I have mentioned it before the many people you see when you got to Iowa City as far as just getting checked in. There is the check-in ladies, the lab crew that draw your blood, the lady that meets you to take you vitals and ask questions, the lady that comes and asks you about the medication you are on, the Nurse Practitioner/ Dr in training that comes in and checks you over and asks you questions about how you are actually doing and if you have any questions.They do a little exam and then are done. Next Karen comes in who is the trial drug representative. She goes over the blood work, gets you your next 3 months worth of medication and takes what you have left. Sets up appointments and answers any questions or concerns we may have. When she is done or as she is about done then Dr. Gingrich comes in. So a total of 7 people I go through before I am even really seen by Dr Gingrich and there isn't much left to go over but it is still a joy to visit with him and hear what he has to say about what is going on with me. He is truly a wonderful doctor.

Today Karen in going over my blood work tells me that my white count is up and so is my liver enzymes. They are accounting this probably to the prednazone, which I am on for my poison ivy. I say probably because they are sure it accounts for my white count but not totally the liver. The Tasigna/Nilotinib has a tendency to raise your liver levels and this is something they always watch. I will have my blood recheck in a couple weeks here to check and see how they are doing. The normal range is 0-20 and mine was 53. My white counts was up just a little with ranges from 3.7-10.5 and mine was 13.3 so just a little high. My test results from my last visit still weren't down to the zero where they would like for my leukemia. Depending on how my results are this time (it will take up to 3 weeks to get results) if it hasn't gone done then, they will up my dose from 300mg to 400mg.

Ok, now my poison ivy. So three weeks ago coming this Wednesday it was finally cool enough that I was able to concur my weeds in my front flower bed. This is not a very small flower bed and it had many over grown weeds. I never really knew exactly what all was in the flower bed since we moved in but did recognize some hosteas and so just went with keeping those and the rest went. Well, two days later I have a few patches on my forearms that are itching, the next day some on my legs. I go to Doctors here in Johnston for a first time visit and she says poison ivy. Uhgg! At the time it wasn't that bad, with just some spot like I said, on right forearm and a little on my leg. Well after about another day I had more on both legs and both arms. But it was the weekend and knowing it was poison ivy just got some poison ivy wash and cream from Walgreens and used that 3-4 times a day for some relief. By the end of one and a half weeks I now have it on my both arms, legs and chest and creeping up my next. I start to panic now and am sooo uncomfortable! But, it is Labor Day weekend so end up going into Urgent Care. The doctor there was very nice but was concerned about the medication I was on with my leukemia that she suggested a different poison ivy wash which she said would work better. Well, I think it made it worse because I received NO comfort from it. Now it has been two and a half week and there is now some on my back too. Back to the doctors I go where on Friday of last week I finally am able to get on Prednazone. I am finally starting to get some relief. The cooler the weather the better off I am. I have given into the itches so will probably have some scars but hey. I NEVER thought about having poison ivy in my own flower beds. I hadn't really ever heard of it before so I wasn't even looking for it. Now that I look back we have found a couple small plants. Now I just have to get rid of it. So that is my story and I'm sticking to it. (hahha)

Things are going well here in Johnston, Iowa. The kids are getting involved in school. Making friends is no problem for Hanna and it will come for Nathan. He involved in French club, Jazz Band, and Soccer so some way or another he will make some friends. Craig is staying busy at the New Hope Church with outreach ministry stuff and I am busy here at home with house stuff. I have applied for several jobs but have honestly enjoyed the days home alone but miss the work too.

Some of you may have seen the special on ABC, NBC, and CBS the other night called, Stand up to Cancer. First off, I think it was amazing that all three networks got together to do this second I encourage everyone to donate to this wonderful cause. All the proceeds go to new drug trials and cancer research. We were told today from Dr Gingrich that this test drug I am on, Tasigna/Nilotinib is now on the market and has basically replaced the Gleevex because it is working so well. He also told us that new studies they are doing that he is excited about is that people who have been on the Tasigna and have gone into remission, after a period of time they were taken off of it and 50% of the people started showing signs of leukemia and went back on the Tasigna with still great and fast response. The other 50% who went off it and were able to maintain the normal numbers after 6 months have been able to stay off of it so far. These are encouraging thoughts and words. What once there was no cure for now has a drug that can put you in remission with the possiblities of eventually getting off it too. This is great news but they wouldn't be able to come up with it with out the funding. Go to www.standup2cancer.org and make a donation and help some a life. You never know who might be saving.

An UP-lifting Experience

UP-lifting experience" is what I had June 2 at about noon. I had to be at the hospital at 10:30 and was taken back to surgery probably about 12:30. I cant say I remember much of it or any of it for that matter. I have a hard time remembering any of it up to about 6:00pm. Which is a good thing right. You don't want to remember what happened during surgery. Dr Kaaki said everything went well with the hysterectomy and he worked on the vaginal area as well as the rectum area. That all went well but while he was working on the bladder and suturing it up (Hence the uplifting experience) he nicked my bladder and so then had to do some extra repair on my bladder and now instead of only having a catheter for two days I will now have it for 10 to give my bladder time to heal. That part really stinks. I wasn't thrilled about having it two days but 10 is the pits. I have a new feeling of empathy for those who have to wear one on a daily bases.

I came home from the hospital about 1:00 yesterday. I have to take antibiotics as well as a stool softener and a couple pain meds. Speaking of which, "Hey Craig, I need a pain med."

I slept well last night. I woke up every time I had to roll over but was able to fall right back to sleep. Was up for a little while at 4:00 to take some pain meds and then sat in the recliner thinking I would read some but only got about 2 pages read for I headed back to bed.

I had a little concern with the redness of my urine in my bag but just talked with the nurse and she checked with the Doctor who said that would be normal with the suturing of the bladder for a while.

My biggest prayer right now is the bowel movement. I am going to need to have to have one, more then likely, in the next 24 hours and I am NOT, repeat NOT looking forward to that. He did quit a bit of work down there too and so the first time is not going to be fun.

So that is where I am at right now. I actually feel pretty good all in all. I have kept in contact with my Trial Drug lady Karen and she has advised me to stop taking my Tasigna/Nilotnib til after I have finished taking the antibiotic. Thank you all for your prayers during surgery. I greatly appreciate it.

Being a Good Girl

Did you know that being a good girl can get you in trouble? Well, it happen to me today. Craig and I got on the road headed to Iowa City for my third appointment in a row when I thought, "I need to take my pills." So like a good girl I took them. About 15 minutes later I was getting a call on my cell phone but I was having trouble getting it out of my pocket therefore I missed the call. I tried calling it back and found that it was from the hospital in Iowa City but I couldn't get the person who called beings they were on an extension. I assumed it was Karen calling to talk to me. About 30 minutes from Iowa City Craig says, " Were you suppose to take your pills today before your testing?" Ah Crud! That was it.

When we got to the hospital and the nurse called me back I told I had taken my pills and she would have to call Karen to find out what she wanted to do. I lucked out. I it was fine. See I was suppose to not take my pills so they could do three EKG's and then take my pills, wait two hours and do three more EKG's. Oops. Karen said we will just do the blood draw and the post EKG's, not a problem. I told her I was just trying to be a good girl and get my pills taken. Actually, it wasn't even her that called earlier on my phone. I still don"t know who it was. God I guess. He was a little late though.

I am still working on a schedule to get those darn things taken. Fasting two hours before taking the pills and one hour after taking them, the night times have been my struggle. We eat so late especially now with kids in soccer till 6:30 at night and meetings starting at 6:30 or 7:00. I take my pills at like 9:00 then I cant have a snack before going to bed cause 10 is just too late and by then I am going to bed. The strange thing is, that I didn't really have snacks before going to bed anyways but it is just knowing that I can't if it is going to be that late. It should be a good thing. I just wont eat breakfast or supper, I need to loose weight for the summer anyway. (Just kidding mom. I wont really do that!)

So it was a shorter day then we expected which was nice. I had asked the nurse if there was a Good Will store close by and she told me about the one close to Coralville Mall. The back of the van had 8 bags of stuff so we dropped them off. Actually, we dropped them off and I picked up one. Meaning, I ended up buying some clothes. Then we had a coupon for Red Lobster and ate lunch and headed home.

On the way home it started raining and there was some lightning too so called the school when we got close and found out that Hanna's soccer was canceled so told them to ride the bus home. It was nice to be home an hour before the kids got home. I got a few things done.

Now I don't have to go back to Iowa City till April 26th to see Dr Gingrich. Things have been going well with this drug so far. No nausea after taking the pills and my puffy eyes aren't nearly as bad either. One thing that has changed...actually two things that are kind of embarrassing. First, my bowels... well, let's just say I could go to the bathroom about 30 minutes after every meal on my Gleevec and I really didn't mind that. But this last week that has changed quite a bit. I do believe this drug has a tendency to cause constipation so that could be a problem. Second, (sorry guys there is no nice way to say this) my boobs have been more sore. I did mention that to Karen this morning and that was a new one to her. It is just mild I guess but I will be...uhmm... monitoring this until my appointment with Gingrich. It could just be the change and that will all settle as time goes on. Remember, shortly after starting Gleevec my periods were much heavier so who know. Ok, embarrassing stuff done.

The big basketball game is on and Nathan wants me to watch it with him. I don't really care who wins since the UNI Panthers didn't make it but it is time with my son.
I will keep you posted if things change. Until next appoint. So long.


(Picture of me as "Good Girl")
(Ok, Maybe not?)

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!