Hi Beth and group- I wanted to respond to this:
wondering if you Pat, or anyone else knows of anyone with cml who has tried alternative treatments completely, through use of herbs and supplements... those things which support health but are contra indicated with the use of the kinase inhibitors? Just wondering if anyone out there has thought about or tried this? ----------------------------- I have not done this personally, but I can share that my PCP checked my Vitamin D levels, partly in response to my concerns about fatigue, and found they were deficient. I am taking 5,000 mg a day and this has really been helpful in boosting my energy and just general feeling of well-being. And I live in Arizona where it is sunny almost every day! I've since read several articles about Vitamin D, and deficiencies are fairly common as we get older, and are also linked to depression. A friend with lymphoma advised me that she faced the same thing, and takes 10,000 mg a day. Both she, and my doctor, say the government recommended amounts are too low. It takes a separate blood test to measure for a Vitamin D deficiency, it's not something that is automatically in our regular blood tests. It may be worth looking into and discussing with your doctors. In terms of complementary and alternative treatments, the CML Advocates Network had a call for people to take part in a study of this last year. Here is the link: http://www.cmladvocates.net/index.php?option=com_content <http://www.cmladvocates.net/index.php?option=com_content&view=article&id=15 1:camsurvey&catid=3> &view=article&id=151:camsurvey&catid=3 Those doing the survey are in Europe, and I haven't seen a report on results yet, but will see what I can find out. As far as trying things on our own, there is some good information on the NCMLS website about herbs and supplements that are known to cause issues, so I would definitely review that if you are considering something like that. http://www.nationalcmlsociety.org/living-cml/drug-food-interactions What I see over and over regarding depression and well-being is the suggestion that cancer patients should exercise, well, that's a bit hard when you're dealing with so much fatigue, as we all know. There is a clinical trial underway at MD Anderson with the drug Nuvigil to see if that will help with the fatigue. If so that, may be helpful for many of us. Here is the link to the trial data: http://clinicaltrials.gov/ct2/show/NCT01169753 And, since I am here writing already, I wanted to mention that I will be going to Santa Clara, California on April 28 for the Living Well with CML seminar for the National CML Society and if any of you are also going to be there I would love to meet you in person. Several people are coming in from another group I'm in, and, gosh, it's going to be so great to actually meet these great folks who were there to lend their ears and knowledge when I was first diagnosed and helped make this easier. It's one of many great things going on, check the NCMLS website for more if you are in the US. ( Beth - I think you're in Chicago? There's a CML Connection meeting coming up there.) Hope this helps!! Pat Elliott Phoenix, Arizona -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
