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.

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.."

Hmmmmm?

Guess what! I finally got my test results. Of course I also had a Dr appointment today too. The nurse asked when she took me back if I had any questions or concerns for the Dr and I just said, "I'm waiting for my test results." She said "From today?"I replied, "No, two weeks ago." She just said, "oh" and left. Real helpful. Well, that might all change. My test results said everything was looking good. That my Gleevex was staying in my body like it was suppose too but then why are my numbers going up? For some unknown reason in some people the Gleevex sort of stops working. It stops killing off those pesky mutating chromosomes. They are finding a way to fight through my Gleevex. The good news is that there are still other drugs out there that have worked that we will try. Now don't ask me their names. I couldn't tell you. They are nothing I have heard of before.

While we were in the office with Dr Sangha he called Dr Gingrich in Iowa City and conferred with him. It made me feel good that he has been talking with him. I always felt good about when I saw Dr Gingrich the one time and deep down sort of wished I had continued to see him. Well, my wish may be coming true. There is a drug that they have been doing group studies on that I may take part in. I would need to go to Iowa City however for some of the blood work. So we are going to be making an appointment to visit with Dr Gingrich and get more information about both of the two drugs and decide then which to try. At this point I will continue to stay on the Gleevex.It may not being working completely but it is keeping my white cells down and that is good.

So that is really basically where I am at for now. I do have another appointment to see Dr Sangha in a month. I am not really worried about my counts going up right now. The way we are looking at them is on such a molecular level that it is totally still manageable but good that we are catching it now rather then much later. Dr. Sangha said too that it isn't anything at this time to be worried or panicked about. There are still many options out there for me.

I wrote last time about how my mind was taking over and I was afraid I was feeling symptoms of my leukemia getting worse. For example cramping around my spleen. Well, it really was the chiropractor that helped. And as far as the fasting goes, well that hasn't happened yet either. Maybe one of these days. I know I would probably feel better if I did. I know when I stepped on the scale it would be nice if it said just 10 pounds less. I don't think I mentioned last time that I was getting my flu shot. Well, I got that last Friday and man was that NOT fun! That night my mind started working over time. I hadn't had an anxiety attack like that for quite a while. I felt like I was having an allergic reaction. My eyes were itchy, and my chest was congested. My mind just went into over drive that I wasn't going to be able to breath soon. Needless to say I was fine. However when I got up the next morning my eyes had a lot of goop in them and they were beyond puffy!! It was really scary. My son even said in the morning, "What kind of flu shot did you get mom" My mind will always be like that but I can see the signs, my not breathing (as my husband says) and just the feeling I get in my stomach. I am thankful that I have Craig to go to who can just sit with me and remind me to breath more often then what I have been and that I will be just fine.

This past weekend I was able to finally meet David, whom i wrote about a long time ago, who was diagnosed with AML (Acute Mylogenous Leukemia) shortly after my diagnosis. Just an update on him. He is in complete remission but will continue to be tested on a regular basis. God is good!! I know he thanks many for your prayers and I can look to him as an encouragement. He has had to go through a lot more then I have and look how well things turned out for him.

Also, this evening we, as a family, had the privileged to have dinner with our friend Connie whose daughter had the severe infection in her C2-C3 vertebra, had an emergency surgery,and was put on a respirator and basically had no feeling in her body from the neck down. Her daughter, Suzanna, was taken off the respirator Tuesday and has been able to stay off with out needing to have a trachea put in. And the same day she had some pain in her left arm. These are all wonderful steps and proves what a fighter she is. Of course the doctors and nurses aren't saying a whole lot yet and are thinking that the pain she felt may just be phantom pains but I truly believe it is God working slowing in and through her. Continue to pray for her.

Just an update on my family. We all continue to stay VERY busy. (I think that is an understatement) Anyone with kids knows how it is. Both kids are involved in soccer and Craig and I are coaching Nathan's team. This is the first year in many that we have had a U-14 team so that is pretty cool. He has his first game on Saturday and Hanna has her second game Saturday. She won her first game which was really good being's they had never played on their field till that day. So soccer keeps us busy with each having practices twice a week and games on Saturdays'. Last Saturday was our first Bible Quiz match. Our teams did great. Of course both kids are involved in that as well as Craig and myself. One of our junior girls placed first. Then there is the busy Wednesday schedule at church with bell practice, praise band, and choir practice. We had our Ice Cream social last week and that was a wonderful turn out. There was 14 pork tenderloins cooked up, and 38 gallons of ice-cream made and there wasn't much left at the end of the night. So with work on top of all of this,and being a mom, how am I suppose to answer when the Dr asked if I am feeling tired? What do you think!!

Still waiting!

Well, I called the Dr office Wednesday and they hadn't gotten the test results yet but that Dr Sangha wanted me to up my dosage back to 800mg on the Gleevec. I found this kind of strange. I thought he would wait till I got the results back to see if the Gleevec is even in my system. I guess I don't really know what my options are if it( the Gleevec) isn't in my system. If he will just stay with the Gleevec at the 800mg or I guess I thought he would put me on something different.

My mind is trying to take over but I am trying not to let it. (Kind of hard if you know what I mean.) Last night my right side started hurting. More like cramping. The kind I would get when my spleen was enlarged. Except this time it isn't going away. I am really thinking it has nothing to do with my spleen but more my back being out of whack. I know it sounds kind of strange but one time when I went to the Chiropractor he cracked my back and I could feel it all the way through to about the same place. Any way, I have had this cramping before but I cant say whether it has anything to do with my spleen or just me getting old and out of shape. I will mention it to the Dr tomorrow, I think.

I have been thinking I need to fast a couple days again like I did when I first found out I had this Leukemia. I felt it was my way of cleaning out my system. Maybe that is what I need to do again. I did feel better after I did that. It was only for about 3 days. I don't have the strength to go longer. Plus, this time I wouldn't be able to really fast. I cant take my Gleevec with out taking food.

So that is where I am at right now. I didn't call the Dr today. I figured I would just wait till about noon tomorrow and call again. Plus, I already have to go to Waterloo tomorrow to get my flu shot so I could get a copy of the results if they are in. Man, I hope they are in and yep, I am getting the flu shot. Guess I don't have much choice any more. It is highly suggested that I do now. I haven't had one probably since Hanna was born or before (Nine years)

Before I end I have a major prayer request. A very good friend of mines daughter, Suzanna, has recently been hospitalized in Iowa City. I use to do daycare for Suzanna's girl for about 3 years. Anyway, they did an emergency surgery on her C1 and C2 vertebra. She had been having some numbing which became very severe. She had a major infection in her vertebra and possibly spinal chord. ( I do not know all the exact details) but since her surgery last Friday she has been on a respirator and has no movement of the majority of her body except her right arm from the elbow down. They were hopeful that she would be able to get off the respirator but I heard last night that this is probably not going to happen and that she will be paralyzed on most of her body except that right arm. She just had a baby this spring and of course her 10 year old daughter. She was also recently married a year ago. This is a lot for anyone to go through but with the recent marriage and the new baby and also had just bought a house they were moving into in Oct all adds up. Please keep the family in your prayers. Suzanna is a very strong young lady. I have always admired her and how she has worked so hard and raised her child. She was a very young mother with her first child (did I mention her first child was born weighing 2 pounds) and didn't rely on her family to get her through. She finished school and worked hard to make a living for her new family. She is very dedicated. I still have hope that thing can change for her and that she can get some movement back but it will take a lot of hard work. Please pray that she does not get discouraged and that God show her himself and give her strength.

OK, so I will hopefully get news tomorrow and then have more to write about again soon. Keep praying.

Bum, Bum, Bum!!

Once again it has been a while since i have written. I am struggling. Things in the beginning were all going so fast and for the last three months they seem to be at a stand still. I know I talked about plateaus before in regards to my blood being at a plateau. This time it is the action we have been taking and what seems the lack there off that has come to the plateau.

I saw Dr Sangha August 28th for blood draw and to see the Dr. I had forgotten or didn't realize that at my July 27th blood draw they had drawn for the FISH test as well. When I was in this last time he was a little concerned about those test results. My count had gone up. From .06, to .12. So they did another FISH test on the 28th. Dr Sangha just said that it could just be a "bad batch" or a "Bad run" per say. At that moment of my appointment I really didn't worry or think about it. He had told me this could happen. Plus, I was in a MAJOR mood at my last appointment, due to my plateau I was feeling and not feeling like I was getting very good treatment from the Dr and nurse in regards to getting test results and the what not. But something inside me said that Dr Sangha was thinking this was more then just a "Bad Batch." I just wasn't really wanting to hear i t just then. He told me to call a week from Monday and check in with him in regards to the results.

My white count that day and the rest of my results were still looking good. My white count was at 5.3 which is on the low end of normal but good. I asked about if I should be checking into getting flu shots and what not and after some him hawing he said I probably should. Kids at school have already been getting the flu and it is only Sept, the start of a new school year. I need to call Dr. Christiasen about that yet.

So today, I called to get my FISH results. I was impressed this time that the nurse could actually tell me the results this time but wasn't sure if Dr Sangha had seen then yet so said she would check with him. I got a call back about 12:30 and it was actually Dr Sangha. You know it isn't good when the Dr actually calls you back. My FISH has gone up from .12 to .3 now. Now I have to go back in on Thursday morning at 8:30 to have another blood draw. He wants me to not take my Gleevec that morning and see how much Gleevec I have in my system. He says there are some Leukemia's that after a while start to like resist the Gleevec. Then after my blood draw I can take my pills. My number could be going up just because we lowered my Gleevec from 800 to 600. If that is the case it will be an easy fix. If not, then I am not sure what we will have to do. Craig says there are other super Gleevec meds that I can take and try.

So now it is another waiting game. I don't know how long it will take to get this test results back come Thursday but I will get back to you when I know more. My mind of course is struggling not to think bad thoughts but I can trust that my counts are still at a controllable level and still quite low so that is great. We have caught this early. I can tell myself all this one moment but then the next worry like you wouldn't believe. I have to admit, I had a hard time not crying when he first told me my count really was up. It was a good thing I was at work and was extremely busy testing kids all day and didn't have much time to think about it. In fact, I stayed busy up until 7:30 with Hanna's soccer practice and then Nathan's. And by the time I got home I was almost too tired to think too much on it. Tomorrow will be yet another very busy day. Even more busy with more testing at school and then Bible Quizzing, followed by bells practice, Praise team practice, and then Choir. Then before I know it, it will be Thursday morning.