Hi Gerry,
I wrote to a holistic dentist yesterday asking for a second opinion. On her website, she stresses that she believes in talking care of the "whole person". I like that approach. I liked the dentist I usually see. I felt he was honest. However, it looked like he was in the midst of some serious dental work on another patient when I walked in. I ended up with his new employee who seemed very young and fresh out of dental school (both good and bad). I wondered if as a new employee, and especially on a slow month, he felt pressure to impress by presenting a big bill. I don't know. I was just suspicious. However, since he made his dx, I cannot see where my regular dentist would not stand behind him despite the fact that I may not need all that work (or any of it). It would be a hard place to stand. So, I cannot ask my regular dentist to take a look. I have to go elsewhere. Hopefully, I chose a good person. I was very discouraged when I asked the young dentist what I could do about the decay, he told me there was absolutely nothing. I cannot find good dentist recommendations right now from anyone. No one appears to love their dentist and just gives them a "good enough" rating. So, I started to search for a holistic one. This is probably the best idea due to CML. The other dentist just said, well, if it is allowed by your oncologist, then OK. Thus, he sees the mouth as separate from the whole organism it is attached to (i.e. the body).
After some reading, I have come to believe that tooth decay is still a mystery to dental professionals and the research is often contradictory (they still cannot find a cure or know what exactly causes decay and mouth sores for that matter). And it is many times a judgment call on what is considered a cavity (although the office I visited used a laser cavity detection wand to try and determine the depth of the decay when spotted). Not sure about the laser wand technology or if it is really sound. I also know that teeth, as they are bone, and as bones do, regenerate. There are things you can do to help that process (and possibly reverse decay). I would like to try a mineral routine, such as what you and others mentioned. I continue to pull oil (this may help heal decay). Of course, there is a diet theory. However, I am not sure how I will stay away from the evil foods mentioned (legumes, grains, nuts--a big source of protein in my diet--I'll read up more on it). It doesn't seem practical and I am not sure about the evidence that certain foods definitively cause decay (with the exception of processed, little or zero nutrient food). My people are long past the hunter-gatherer stage and I don't grow my own food (so said these people had little or no decay). I will try meat broth. It appears to have good reviews, if not just healthy for bones anyway.
I know you are well educated in the use of supplements, (and CML), and are familiar with holistic medicine. There are way too few holistic practitioners (and my insurance never covers them). BTW, my husband also had some neck issues. I have a little soreness, so I bought a couple therapeutic pillows that are supposed to work like traction on your neck (I will be edited if I give brand name--if you want to know, feel free to pm me). At first I would get headaches and dizziness (it was so weird). But I kept at it, little by little. Now, I like the pillow and find my neck feels OK (it has only been since Christmas, so its success is yet to be really determined). I too thought about osteo arthritis. It appears it is prevalent in younger and older women despite the TKI. As I am in my 40s and female, I think it may be hard to pin it totally on the TKI. I could very well be getting arthritis. I have been taking it very easy with my hands and it seems to help (I am extremely heavy handed and do everything with way too much force and twisting). I also get terrible pain in my lower legs and arms (usually at the same time). My 87 year old mother in law gets this and has been dx with neuropathy. I think I have it too. Why would I see a doc? More meds I don't want to take. There is no cure. I will just live with it. I know Sprycel could be the culprit. Exercise and stretching helps a little.
The one thing I totally worry about now, besides the disease progressing, is the TKI accelerating the breakdown of my body. I think you can relate. At first, I was happy just taking the TKI no matter what. However, if I will lose all my teeth, have neurological and heart diseases, etc. as a result, I am not so sure I want to keep on such a high dose (the thought of never having to take another pill looks good too, but I feel that is not my destiny like yours). I totally understand that the drug is prolonging my life. And I know people who do not have this disease may consider me lucky there is successful treatment. I may be considered looking a gift horse in the mouth. Well, I would like them to temporarily live with what we have and what we do, just to understand (of course I am just saying this, I wouldn't wish leukemia or cancer on anyone). I consider most of our CML complaints legit and the quality of our "prolonged" life important. I sometimes worry something else brought about by the drug will get me way before the leukemia does, or I will be disabled in some way due to prolonged use. That would really suck. But only time will tell. The TKIs are still all so new. We are the pioneers. I think it may be possible the drugs could be re-engineered to not cause PE, or PAH, or QT Prolongation, neuropathy--whatever the major players are. However, since the drugs work well enough for most, I don't the see pharma's desire to re-engineer to get rid of these known side effects. People with CML are still a minority of the population and I think those of us who cannot go off the drugs may just have settle with what we can get. Being monitored so often is a plus.
All the best to you! We have been having sub zero temperatures in Chicago. Hope your summer is not too hot and the weather is fine. It really helps with one's mood!
Thanks so much for your input, I value it.
Tedsey
