Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 In a message dated 5/15/2007 5:28:50 P.M. Central Daylight Time, mdcfam3@... writes: But don't worry so much about the WBC so much as platelets. Ok, thanks! My platelets were 385. They had been really low and dropping for a bit. I guess when I see him in a month we will have a better idea. It just has bothered me that ever since I got off the Hydrea-(cannot spell that drug) and my WBC was at like 2, it has ever so slowly crept back up. I keep thinking that is what it must have been doing before my Dx. I had WBC of 544 when I went into the ER in A-Fib. I thought I was having a heart attack, in fact my heart was out of whack due to the blood issues. I obviously am still coming to grips. I just am coming off such a good month and was so disappointed today. That is ok! I know there will be days like this. Chris ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Yes I have been as high as One hundred 40 thousand & as low as 1thousand.You might consider switching to disatinib or looking in to the clinical trials for AMN 107 which is what Iam doing now.But don't worry so much about the WBC so much as platelets. [ ] WBC question Hello everyone: here in Florida. I am still fairly new here. Dx, March 1, 2007. I have been doing really well. Monday, I had a brain MRI to rule out anything additional as the Gleevec has given me some pretty severe headaches, which now are getting better. I am happy to say it came back normal. Today I had a CBC and MD visit. First CBC in a month. MY WBC had gone up from about 6.5 to 12.9. My other counts were good. I was really disappointed, no, pretty upset and had a hard time getting across to my Dr and wife. The Dr was not concerned, in fact said he was more concerned with my pulse only being 45 this morning than about the WBC. I asked if the Gleevec is starting to not work? He shook his head, stating he really did not think so. Anyone else had the WBC roller coaster? Thanks!!!!! Chris ************ ********* ********* ******** See what's free at http://www.aol. com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 I am on 400mg Gleevec. Chris ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 WBC do vary, mostly with infections (colds, flu, ENT infections, GI infections, etc). I had my WBC hike a couple of time to about 10, from the usual pretty stable 5-6. And you are just a month and half after dx, I had some ups and down the 2 1st months. I know it's pretty stressing to be waiting for the 3 months or 6 months BMB watching the blood counts do their dance, we all had to go through this, but odds are quite good it will get back to normal. Cheers, Marcos. On 5/15/07, letitbe@... <letitbe@...> wrote: > > Hello everyone: > > here in Florida. I am still fairly new here. Dx, March 1, 2007. I > have been doing really well. Monday, I had a brain MRI to rule out > anything > additional as the Gleevec has given me some pretty severe headaches, which > now > are getting better. I am happy to say it came back normal. > > Today I had a CBC and MD visit. First CBC in a month. MY WBC had gone up > from about 6.5 to 12.9. My other counts were good. I was really > disappointed, no, pretty upset and had a hard time getting across to my Dr > and wife. The > Dr was not concerned, in fact said he was more concerned with my pulse > only > being 45 this morning than about the WBC. > > I asked if the Gleevec is starting to not work? He shook his head, stating > > he really did not think so. Anyone else had the WBC roller coaster? > > Thanks!!!!! > Chris > > > > ************************************** See what's free at > http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Hi Yes, you are so newly diagnosed so take a big breathe...the first while is very hard but just sit back and try to just work with the side effects as best as you can..My husband was diagnosed in Oct 2006. He experienced the whole gammut of side effects - from being really sick to headaches, bone pain and neutropenia. CBC should ideally been done weekly at this point - just my opinion...my husband is 8 mths into gleevec and has biweekly CBC. For your blood count to go up like this- I would ask for more frequent bloodwork to be done as it can change so much. Usually with gleevec, things go down as the leukemia cells are being killed off. What dose of gleevec are you on? What side effects are you experiencing? There are many options - so keep exploring with your dr and maybe you may have to go up in dosage?? shalyn > Hello everyone: > > here in Florida. I am still fairly new here. Dx, March 1, 2007. I > have been doing really well. Monday, I had a brain MRI to rule out anything > additional as the Gleevec has given me some pretty severe > headaches, which now > are getting better. I am happy to say it came back normal. > > Today I had a CBC and MD visit. First CBC in a month. MY WBC had gone up > from about 6.5 to 12.9. My other counts were good. I was really > disappointed, no, pretty upset and had a hard time getting across to > my Dr and wife. The > Dr was not concerned, in fact said he was more concerned with my pulse only > being 45 this morning than about the WBC. > > I asked if the Gleevec is starting to not work? He shook his head, stating > he really did not think so. Anyone else had the WBC roller coaster? > > Thanks!!!!! > Chris > > > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2007 Report Share Posted May 15, 2007 Hi My husband was dx in July 2006 and is now on 800 mg of Gleevec. His WBC has been normal since he came off of Hydrea in August. We did have one increase in October which scared us all. It turned out that it was a reaction to a steroid injection he had gotten for carpal tunnel in his wrist. We waited another month and the WBC was back to normal!! CML is definitely one big roller coaster ride. Remember that lots of things can affect your WBC. This group is a great place to reach out and find support. Good luck to you and your family. Debbie > > Hello everyone: > > here in Florida. I am still fairly new here. Dx, March 1, 2007. I > have been doing really well. Monday, I had a brain MRI to rule out anything > additional as the Gleevec has given me some pretty severe headaches, which now > are getting better. I am happy to say it came back normal. > > Today I had a CBC and MD visit. First CBC in a month. MY WBC had gone up > from about 6.5 to 12.9. My other counts were good. I was really > disappointed, no, pretty upset and had a hard time getting across to my Dr and wife. The > Dr was not concerned, in fact said he was more concerned with my pulse only > being 45 this morning than about the WBC. > > I asked if the Gleevec is starting to not work? He shook his head, stating > he really did not think so. Anyone else had the WBC roller coaster? > > Thanks!!!!! > Chris > > > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 We have similar discussions with our Dr. We feel something may impact our results and disagree. Example: Our Fish Levels started to rise unexpectedly. My husband had started taking his Gleevec with another medication in the morning. Too many pills and it was just easier. Our next Fish test the levels rose! We tell the Dr. that we suspect taking his Trileptal (seizure) pills and the Gleevec together may have created a problem. Dr. says he doesn't think so. We separate them anyway, wait a month, and guess what???? Fish levels come down again. I guess what I am saying is only you know your body. Any injection, virus etc can affect your WBC. My husbands steroid injection had only been the day before the blood draw as well! Our Dr. tells us to look at the trend of Fish levels, WBC etc. You have a long road ahead of you. With my husband, after a couple of months the side effects of the Gleevec subsided. I constantly tell him he is the healthiest sick person I know!!!! Good Luck Chris. Hope this helps! Deb > > Debbie, you know I just thought of something. I got an injection of dye > yesterday for the brain MRI. I wonder if that could have any effect? But, then > again, it had only been 24 hours. It was really nice to hear the MRI was > normal. I just knew everything was going to be great today was let down a bit. > The Dr, I do not think he got that. I guess it really is not the big deal > I was or am making of it is why. I know every one of our cases is different > and in mine, he must be very comfortable with the direction things are going. > > I am still having as I call them, my afternoon, Gleev-aches. Sort of like a > headache, accept, these really hurt. Then the joint pain. I really like > and trust my Dr, but he wanted to discount it to the extra hard work I had done > in the yard over the weekend. No way, this has been going on for weeks I > tell him. > > Oh, well. He is a great Dr and CML specialist. > > Chris > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2007 Report Share Posted May 16, 2007 Try the website www.drugs.com You can type in the drugs you are taking and it will check for interactions. Deb > > Hi Deb, > > thanks for your thoughts. I have started taking one new pill with the > Gleevec, same reason, just easier. I am suffering from the memory loss issues and > taking a pill is something I really have to work on as it is. I started > taking Tompamax for my Gleev-Aches, as I was joking my headaches about 3 weeks > ago. I into the 3 per day phase now. I just wonder if they are having an > interaction? > > If my WBC is still elevated next visit I will talk to him about this. > > Thanks for your thoughts and experience, > Chris > > > > ************************************** See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
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