You are definitly not alone, that's for certain. I know my husband and maybe others get tired of hearing me complain a lot, so I've decided to try to keep it to myself as much as possible. Course, you do have those who can "read your face" and tell when you aren't feeling all that well and question you. My exerience with the different side effects aren't as severe as some others have had. And, I've noticed that they sort of "come & go" at times. I was dx in Jan. 2004 and went on 400mg. of Gleevec in mid-February and have stayed with the same dosage ever since with only being taken off of it for one week because of low counts. Since then, my last cbc test done on 6th of last month shows that they are staying pretty steady and even up in some areas from one year ago. My wbc is at 4.4 compared with 3.8 a year ago and my platelets are at 235 compared with 138 a year ago. All the other counts are almost exactly the same. I don't know what the "anc" count is as there isn't anything listed under this on any of my tests unless it's under another name.
I've been taking Advil Liquid Gels for my pain when I need to. Doc said I could take up to three even four at one time if I felt it necessary (up to twelve a day, if needed). But, I've noticed that since I started taking the Glucosamine/Chondroitin (Spring Valley brand/ Triple Strength), I do not have the bone and joint pain as much. In fact, it has lessened greatly. And, I added the Calcet calcium tablets (two at bed and two when get up) and that along with drinking more water during the day has pretty much taken care of the leg/muscle cramps. I had them in my left hand and calves of legs and arches in the foot really bad. I also added some pure Bee Pollen called Natural Energy out of New Zealand from x-tendlife.com and that has really upped my energy level quite a bit. Now, I do notice if I over extend myself, then I am going to be pretty pooped the next day and just have to rest alot. I don't have the diarreah anymore as often as I was having it & as far as the nausea is concerned, I learned to split my dosage of 400mg. in half and make sure I've eaten enough whenever I take it. I still get the "chills" but not as bad as before & I am now having the hot flashes as well as sweats, too, at different times. (My husband thinks I've lost my mind. :>) ) I do have the water retention, so I've tried watching the sodium intake as well as take a water pill a couple times a day. I think we have to just find ways ourselves that off set the effects. And, no doctor ever told me anything about a time such as "you have five years, ten years, etc". All that was said by the doctor that dx me was that he had patients who have been living for twenty years with CML. & the first oncologist I had did not recommend a BMT at all except as a "last" resort as he said they only had a 15% to 20% cure rate and that was with a perfect match. So, I will continue to take my Gleevec and be very thankful. Someone mentioned about how often to have a BMB. My first onc. said he recommended one every three months the first year of dx, then once each six months afterwards. But, he left and my new onc. said he can usually tell just as much from the blood counts and genetic tests they do (fish test) but is going to do one in July which will be almost one and half year since the last BMB. I haven't experienced much pain since moving to the Siteman Cancer Center at Barnes Jewish Hospital in St. Louis. I don't get put completely out for them, but do take some type of iv drug they call an amnesia drug that has some type of "relaxant" in it. The first time afterwards, I barely remember my husband getting me down to the truck and home. I slept all afternoon. (smile) I am awake during the procedure as the nurse guy talks to me and asks me questions. They have a set up to where this is all they do and are quite good at it. You are in and out in no time. Usually takes longer to insert the iv than to do the BMB. And, for me to be able to do this is amazing in itself as I am the world's biggest cry baby who use to faint at the drop of a hat whenever it came to getting "stuck" with a needle. When I go in for blood work, I am white as a sheet and broke out in a cold sweat by the time they are done. The people there are sooooooooo good (kind & considerate) with people like me. (smile) If I had to go through what I did my first time for the BMB (in the doctor's exam room with nothing but a local) I, too, would have chills and be putting it off as long as possible. Before I go, does anyone have any information about an on-line support group for people with Neutropena (not sure about the spelling), it's where the body does not make white cells at all. I have a dear friend with this disease and I've been telling her about you guys and this group. She was interested to know if there maybe was some information out there for her as her six year old daughter has the same disease and she would like to keep up with the latest medical information to better help Elizabeth in the years down the road. She lives in the Birmingham, Ala. area. Thanks to all who post here for all your help in dealing with CML & Gleevec. This has sure been an added life line for me since I live out in a very rural area and do not know anyone else personally with CML . I travel 75 miles to see my onc. once every four months, so I learn more from here than I have anywhere else. Keep Looking Up, Suzieq --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
