Hi Susan!
Congratulations on your continued PCRU status. I have read over each post here, and then I have returned to read over them again. I wanted to wait to think through all of the information that has been provided before answering, but as Janne noted, it is your decision at the end of the day.
I have just recently again sought out answers to questions via private message, and I have always appreciated all the support and advice every member has given me in the main forums, both past and present. When I first hit this site I was a frightened mass of human flesh, hearing the word leukemia, and then no matter how much 'chronic' was noted, I had myself 6 ft under almost constantly. I second guessed my treatment because I did not trust my doctors, I read information that probably had nothing to do with me, and I poured over my labs worrying about the slightest detail, either a raise or a lower number from the normal range. I had a moderate panic attack many members helped me through after the first of the year because my white count had went up several points, I was convinced I was loosing response and life was over. I ended up with a sinus infection and the next month my WBC returned to it's regular 5.2 (or close to it) and it has pretty much stayed there since then. Stress and anxiety are such fun, aren't they?
My liver enzymes are high, they have been high since January, I am told it is mild damage probably due to the medication. The damage is not nearly as severe or as important as allowing the CML to take hold, so I try not to worry, emphasis on try. (also emphasis on the 'mild damage') I know of a young man who ruined his kidneys taking Tylenol, he went through dialysis for years, had a kidney transplant was living life and succeeding, and I found out he just passed away not long ago because of a heart attack. What I am trying to say is, every thing we take, even that man who had severe back pain and ruined his kidneys on an over the counter pain med took a risk, but it was not the kidney disease or the transplant that ended his life, it was his heart. We could second guess ourselves into severe panic attacks, and I sometimes still do, there are a few on here that can attest to that, they have helped me out repeatedly via private message and on the main board.
We come here for support, we know everyone here understands better than anyone else and lives a similar life. In some way most of us that have been here a while have had some similar experience another new/previous member has a question about. What I worry about is the power of suggestion, and how much credibility each one of us should give responses. Trey notes very openly there is no medical degree associated with the posts, and although suggestions are given, potential questions to ask at the next doctor's appointment are provided, and requests for posting medical documentation of CML problems/situations to help others are often written, there is usually some form of disclaimer stating one should talk to their doctor before changing, rearranging, or reducing meds for certified medical approval. Scuba is very clear although his path is working for him, that does not mean it will work for everyone, and although he will provide the link to where he purchases his supplements, I believe if you are going to try that path, then it should be with a product that is credible, not one bought from the local grocery or dollar store. There are many others who continually offer help, I just chose a few that are continual responders, posted on this link, and have gained serious credibility in our group and beyond.
You seem to like your doctor and trust her, now that I am at Cleveland Clinic I finally understand what everyone has stated in the past. I might still have some questions, but I am comfortable with the medical facility and the professionals so I am trying to relax and allow the people who are knowledgeable to guide me in a healthy path with this disease. We have to trust our professionals, and believe they are caring for us in a proactive manner and we really have to be careful not to allow the anxiety to take over, or allow the possibilities to consume us. You have been very open about fighting your anxiety, and I appreciate that. I have also battled anxiety the majority of my life, and it is a horrible thing. Although we try, it sneaks up on us and takes over before we know it. My appointment was canceled today because the BMB results are not in yet, so although I was not looking forward to a trip to Cleveland 2 1/2 hours each way, I was only mildly disappointed. I did not call the doctor or feel the need to find out if my results came in this afternoon. I was told when they are in, I will receive a call, then I suppose I will be rescheduling another appointment at the Clinic. It amazes me I am not driving myself nuts over the unknown, if I were still at West Penn in Pittsburgh, I think I would have been Xanax-ed out by now.
Whatever you decide to do is your choice, and only you can make that decision, but I believe it should be made with the approval of your doctor, even if it is a split in the dosage. Do I believe it will make a huge difference in your results, probably not. But do I believe you should run things by a medical professional you trust before making serious changes?, yes I do. If you trust your doctor and she is happy with the results, then we have to somehow give up the control and trust they know what they are talking about. If you are uncomfortable with your treatment or decisions, then I believe another credible opinion would be a positive step. We all know a little about this disease, there are several who know a vast amount, but not one that I know of has a medical degree or is a CML who posts on this board. I will be the first one to stand in line and say I do not, I don't even know enough about CML to make me dangerous, the disease baffles me for the most part.
Getting back to the anxiety, because we suffer from anxiety attacks and depression, it is very easy to allow it to take over, to control our thoughts, the 'what ifs', and our lives in general. You noted that today was horrible but it had nothing to do with the CML, but you know what? Probably all of these things swirling around in your head about your results compounded when the day turned crappy, even if it has nothing to do with the CML initially.
Please take some time and consider your choices after some soul searching and personal thought and reflection. Then, just to be sure your doctor is on board with the changes, contact her before you do anything different. You are a great person and you have helped so many people on here, and continue to help them. Again I will gladly be one of the first to stand in that line also, we all wish to provide you with the same support you have unselfishly given us. But that help should have limits, because we are all here because we share this disease or we know someone who is living with it, not because we are experienced medical professionals.
I hope you can rest this evening, and you have a peaceful day. I will be checking in to see how you are doing.
Take care, positive thoughts and prayers to you.
Pam
