Here we go again!

Well my 3 month reprieve off of my cancer meds is over :(  I had an appointment with Dr Talpaz and he has put me back on Tasigna (the meds I have been on for almost 6 years now). After 2 cardiologists and one vascular surgeon assured me "I don't think your artery blockages are related to Tasigna" but ...... we really don't know as these drugs have only been around for a relatively short time (less then 10 years) . Somehow this isn't really assuring to me.

On my 3 month "drug holiday" it took me a month to really notice any difference. Then the next 2 months I still had my leg pain so I think it is caused by something else (oh joy). I did have more energy and when I pushed myself to far I could rebound much sooner. That part of the holiday was nice. However I am still waiting for my bloodwork results that will show if my PCRU status has changed. Dr Talpaz reassured me  if my numbers took a dive that going back on Tasigna will bring them right back to where they should be. Once again, this is only a guess. There are only a few people that are in trials that have come off meds and are doing fine. I do know 3-4 and have talked with one who has been off meds for several years and is doing fine with no sign of relapse. This is hopeful to me but still makes me uneasy.  I like to know what is going on and what is going to happen. This lets take you off your meds for a while and see what happens, is just bugging the crap out of me.  Even though my meds make me a lot more tired, and needing of more rest, dry skin, falling out hair, etc. I kind of liked knowing what was going on and knowing what to expect. Being in a place where I am not sure of what is going on makes me nervous, very nervous.

On another note it seems that the 2 blockages I have aren't going to have anything done to them until "a problem" shows up. I am not sure if I agree with this or not. I do like the fact that I don't need another surgery but then I don't like the idea of the renal blockage causing problems to my kidneys. I guess only time will tell. So it is back to the waiting game, blood tests, mra's etc. I also have been revered to a spine specialist to see if my leg pain is related to spinal stenosis or something else spine related.  That isn't until November so..... more waiting :(

More to come: when I get the bloodwork results from last week. Just kind of rambling today so if it doesn't make sense its me not you... LOL

Part 2

Well, hmmmm,
I had my appointment with Dr Talpaz. What he decided to do is take me off all CML medications and see if I can remain cancer free. Since I now have high blood pressure and 2 blockages of approximately 75% he is positive the blockages are related to Tasigna. So no more for me EVER.

There are a lot of people in the CML world who would be ecstatic to be off their meds, however I am not one of those. The meds I have been on, even though they come with side effects they have managed to kick CML's butt and put me into a molecular response for almost 4 years now. Dr Talpaz's theory is in studies that are out there 40% of people who come off Gleevec remain CML free. The other 60% once back on TKI's get to a cytogenetic  response. Since Tasigna is much more potent then Gleevec he feels that the 40% number will be greatly increased with Tasigna patients coming off the drug.

I am not sure  what it would be like to be off meds and live a "normal life". However for me it will never be "normal" as I still will have to have a pcr done every 3 months for now. Maybe in the future it will be moved to 6 months but I am not sure. In the back of my head I will always be waiting to see when the pesky little f'n leukemia cells sneak back in and start working again. If they do what then??? There are 2 FDA approved drugs that I haven't been on already. Bousilif sounds like the one that I would be put on if I should relapse. Of course it is new and there isn't any long term studies on how that one works and how people tolerate it. There are just so many unknowns, I don't do well with change so I will have to see how this all works out.
Thanks for stopping by,
Chuck

Shoe drop

Well I always wonder when the other shoe will drop. Well today one of the shoes dropped. I am not sure if it is "the other shoe" but it is a shoe. I called my cardiologist to see if my test results came back in, they did.

Let me back track a little, in January my cardiologist found I have a 75% blockage of my left subclavian artery ( artery near my clavicle that feeds my left arm) this seems to be the reason for the low blood pressure in my left arm. I have high blood pressure in the rest of me. I have been on 3 different blood pressure meds. to try and regulate my pressure. The first two I ended up getting a rash from them so I had to be switched. I also have borderline high cholesterol so I am no on meds for that as well. Well I had an MRA which basically an MRI that checks your blood veins and arteries.  My cardiologist was looking for some sort of blockage going to my kidneys. Well sure enough there is. I have 73% blockage of my right renal artery and some blockage of my left renal artery as well.

I have an appointment with my oncologist tomorrow and I am sure we are going to discuss these new problems. I have a feeling he is going to think these heart related problems are related to my meds. If so I see another change in CML meds coming soon. I have already been on 3 of the CML meds and there are only 2 more that are FDA approved. None of them are perfect and all have their own side effects and concerns that come with them. At this point CML wise things have been going quite well. I don't like change so I guess all I can do is wait and see what is going to happen.
TO BE CONTINUED:

Another bump in the road :(

Well it has been a while since I have written. A lot has happened, my daughter got married in June in Cedar Rapids, IA. My stepson got married  in East Lansing, MI in August and my stepdaughter got married in Honolulu, HI in October. So needless to say this year has been kind of a blur. Things have been going fairly well with my CML. I have a new oncologist Dr Talpaz who is one of the best in the world dealing with CML. I am thrilled to be able to have such a brilliant doctor as my oncologist, just in case in the future I may need to put his brain to use to keep me on the level.

Now for the bump,  in Dec I had my yearly physical with my new family Dr. who happens to be an internist. He found a heart murmur which he said was slight and referred me to a cardiologist to have an echo done and get things checked out. Well I went for the echo and the tech said everything looked ok and my heart looked "strong and healthy". So when I went for the followup with the Dr. he asked a bunch of questions and I found out he was an oncologist in India before moving to the US to become a cardiologist. This put me at ease, until my 15 minute appointment turned into about 45. He kept listing to my heart and moving the stethoscope very small movements on a lot of different areas. He said well..... you don't have a heart murmur but you do have high blood pressure on one side of my body and low to normal on the other. He checked my blood pressure about a dozen times and kept getting the same results. He even let me listen to the strange noise my blood is  making as it goes thorough my arteries (which he feels is the noise my blood is making going through the constricted arteries). He suspects a narrowing of my arteries or small arteries, so he had me come in the next day for an echo of my coronary arteries. The tech said they looked ok, just a small build up of plaque on one side but not enough that would cause the different bp on each side of me. So she paged the doctor and he wants to see me in a couple of weeks to "discuss getting a CT scan of my heart" to see what the real issue may be.   

Well I hate to wait, I really hate to wait.... Everything in the world is going through my mind. My dad had high BP and I have 3 male cousins that have died relatively young with heart problems and my uncle on my Dad's side who has needed a heart transplant in his late 50's. Well I just don't know what to think. I really don't want to take another med with possible side effects and deal with all of that. However I do feel a little at ease that my cardiologist used to be an oncologist so he can check any drug interactions and possible problems.  However here I am wait and see again... Did I mention I really hate to wait!!!

Blennding In

I had a family reunion this past weekend. It was great to catch up on family members that I don't get to see that often. As they say you can't pick your family but you can pick your friends. For the most part I would pick most of my family as friends, everyone generally gets a long and cares for each other. I have noticed that not one person asked me how I was doing. Which to me means people are comfortable with me looking better or should I say healthy. I do look healthy and for the most part on the outside you wouldn't know I have leukemia. Most people don't know how to respond when they ask me how long I have to take my meds, and I respond "until they quit working or I quit working". Which to me is the where the problem is with me, yes I am thankful that the medicine

Ok it is a couple months later, I realized I hadn't actually finished this thought. I can count the number of times on one had, wait maybe never, that I have used the "cancer card". I was helping friends and family a couple of weekends ago. After supper some of the guys wanted me to play cards, as I was sitting on a recliner with my legs up because I had over done it during the day. I repeatedly told them I wasn't going to play as my legs hurt. Then one of my family members said "you always say your legs hurt" so that is when I said, "I tell you what, I will give you a couple of my chemo pills and you tell me how you feel in the morning". I probably shouldn't have said this even though it was true, I do complain about my legs hurting but usually I don't let it interfere with what I  want to do. I usually just know they are going to hurt and keep going. But I have learned  a little better on how hard I can push myself and when to quit. When I go to far I get physically drained and in pain to the point of being sick and I don't like that. I don't like not being able to do the things I want to do but I have learned to get buy by doing a little less or maybe taking more breaks in the middle. I don't mind that other people don't realize how I feel most of the time, sometime it just bugs the crap out of me and this was one of those days.

A battle

After having a very special and exciting weekend this week has turned as far around as you can get. One of my wife's friends was just diagnosed with bone cancer, and a friend of mine that I used to chat with all of the time on CSN has passed away. Just when I am having a moment of hope the door slams shut and reminds me again HEY STUPID YOU HAVE CANCER. I just want a break, some good news for a chance, yes things are going ok with me which I am thankful for each and every day. If it isn't one thing it is another, someone else has to fight this damn battle and someone else has lost their fight. At times I just want to scream//////////////////////////// It is hard on days like this to stay positive, to see the good in the medical field. Why can't cancer be cured, whey do people have to suffer when there is so much being gained daily in the medical field. I have to go, I can't put my thoughts down right now.

Wedding and phone calls

Well I sit here in my hotel room the day after my daughter got married. Wow, let me say that again, Wow. I didn't in my wildest dreams think I would be here for this day. 6 1/2 years ago when I was diagnosed with CML I called my daughter and gave her the news. She was in college at MSU. She tried to be strong but there was so much missing in her voice that I knew her heart was breaking. Jessica and I can talk about anything she would call me up and talk for hours about nothing or about something important, it didn't matter. What mattered was we where talking and I was always a phone call away if needed. Then I could hear it, it was what she didn't say that was loud and clear. A few weeks later she called up and said ALL that was it. so I said no CML and that was the end of the conversation. I know she is a smart girl so I also know that she was looking up as much information as she could on CML, at that time it wasn't good. It was before the TKI's I am on now have proved themselves to be a miracle drug. My own doctor told me 5 years is the average life span after being diagnosed. Well we both knew that wasn't enough time. I lost my mother when I was 24 and that just isn't enough time. Well a few more weeks past and I went down for a doctors visit and I met Jessica and we went out to eat, like we always do when we get together. It reassured her that hey I look alright so maybe things can still go ok. Then about a year later I asked if she wanted to go to one of my appointments to meet my oncologist. To my surprise she did, after going to the U of M Cancer Center, parking, going for my blood draw, then going upstairs to checking and finally getting in to a room, we sat and waited. She asked how do you know what to do this place is so big. I said you do what you have to do, and I have to do this. Well waiting for another hour or so she became more fidgety she decided to try on a pair of blue latex gloves that where in the room. Right when she had them both on and showing them to me, my doctor walks in and I introduce them. He smiles and says you must have been here a while. She sheepishly says yeah, I think that was a turning point in her knowing I was in good hands and being treated with the best treatment that was out there.

I too often wondered if I will ever see her married, will I ever see my grandchildren as my mother never did. Now I also see there is hope, there is a glimmer of hope that a cure will be found and I too will be able to see my child grow up and have her own children. Seeing how happy she was at her wedding is one of the best feelings I can have. I now have one less weight on my shoulders so I think for at least a little while I will have a little more bounce in my step, a little more of a smile. It is hard for me to dream of the future but with my daughters wedding I see with my own eyes that some of my dreams can and do come true.

I am still only a phone call away!