Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 Hi Amy, Sorry to hear about the changes in your counts after 2 years on Gleevec. I hope the biopsy results come back in your favor. I'm curious as to what kind of side effects you are going through? If you wouldn't mind sharing? It seems like the longer I am on Gleevec, the harder and more severe the side effects. I've been on it 1 1/2 years, and it's getting tough sometimes. My Onc doesn't seem to be concerned about the side effects as long as I'm PCRU. So, I feel like I'm banging my head against the wall on this one. Whoopee,, I'm PCRU and feel like crap! That basically sums it up. I'm on 400 mg too, and I'm very grateful for Gleevec.. Don't get me wrong. I just wonder how bad the side effects need to get before a Dr. decides a patient is intolerant? Is there any kind of guideline to monitor the number of Gleevec side effects and when to start looking into alternatives, such as the new BMS and AMN? I may have to wait a very long time before I can switch over. I'm grateful that I have had excellent results on Gleevec,, and it really saved my life. But looking long term (isn't it nice we can do that now)....I need to find something that will help me feel alive again. Sincerely, Lynn (Snickersunny) > Hey everyone! I'm home. I had my appointment with Dr. Kantarjian > yesterday and my BMA. Not the best experience to date. Two dry bma > draws, didn't start my visit off right. Third one worked, now w/o my > shedding some tears <I just hate that> Saw Dr. K and he was concerned > because my Basophils are now at 2% from 0, which he said 'COULD' mean > my phillies are coming back or are up. I should have the BMA results > in two weeks and we will decide at that time which course to take. He > gave me a couple of options........1. We could raise my dose on > Gleevec, as I only take 400mg, and have for the last two years. He is > concerned about the increased side effects, since I have a difficult > time now. 2. I could go on the Phase II trail of BMS 3. AMN107 > Trial. Now with either of the last two options I have to be in Houston > for a minimum of 1 month, and then be there once monthly there after. > I can do that. Anyway thats my news and my choices. I don't know much > about the AMN107, except that it is by Novartis. Anyone have more > details? Thanks for listening! > > Amy B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 At 03:26 AM 6/22/05 +0000, you wrote: >I'm curious as to what kind of side effects you are going through? >If you wouldn't mind sharing? > >It seems like the longer I am on Gleevec, the harder and more severe >the side effects. I've been on it 1 1/2 years, and it's getting >tough sometimes. > >My Onc doesn't seem to be concerned about the side effects as long as >I'm PCRU. So, I feel like I'm banging my head against the wall on >this one. Whoopee,, I'm PCRU and feel like crap! Hi Lynn, I was just at OHSU..........I had my bmb and pending results will start the BMS trial next week..... but my reason of course if that I have never reached CCR........which is not why I am writing you. I have been on IM for over 5 years.....had the bad rash the whole first year..........and high dose, 800mg for 3.5 years.........and my side effects are getting less and less all the time........but mostly I hear the opposite. In fact, I have been feeling so well the last 3-4 months, that it seems like a shame to stop using Gleevec at this point. I still have some waves of fatigue, but less and most of the other symptoms I had are nearly gone. I have no proof.....but I think my diet has a lot to do with it. Also, Dr. Druker's nurse Carolyn seemed to agree......she said that 'a lot of patients just want another pill for the side effects and most of them would not use good diet and some of the supplements that can help " . I don't have a clue how you eat........but I want to share my own understanding of all this.....because it might help you or someone else. Gleevec is an acid drug that we keep putting into our body daily. The blood can't be acid (and Gleevec is going right into the blood) for us to survive.....so the body draws on our alkaline reserves to neutralize the blood. These reserves can be drawn down and when this happens........I think lots of other body areas are stressed...........and this might account for diarrhea, maybe some of the later bone and joint pain, muscle cramping, etc............. So, I offset this by trying to eat alkaline as possible........and supplementing with any greens, etc. I know this makes a big difference for me.......because when I skip them, I pay a price. One of my best alkaline treats is watermelon, which I have been eating every day for several months now. But there are lots of different greens products out there to try. I know that when I got serious about this, I got rid of my problem with acid reflux and vomited stomach acid first thing in the AM. I do work with a naturopath and there are other supplements I am using (and none that OHSU has any problem with) but I think that the alkaline diet is the place to start if you are not eating that way right now. It means less meat....more veggies and fruits, etc.......but heck, that's healthy eating. I never even know how to cook 'greens' before....but now I like chard, and will experiment more with others this summer. Also, you can get a lot of iron from 'beans and greens' if you are anemic at all. Hope this info is interesting or helpful to some...... C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 , thanks so much for the diet info. I am on 600 mg per day of Gleevec and still having awful side-effects such as diarrhea, nausea, stomach pain, fatigue, etc. I hadn't heard the info about Gleevec being an acid substance and to eat more alkaline. I love greens and seem to crave fruits and veggies right now--I too love watermelon. My son and I will have to buy one and work on it together--he is a watermelon freak. Thanks for the good info. My counts are hovering right around 18K and not much lower, so not sure what is going on. Dose was increased at Dr Druker's request, and he is being kept informed about my counts, so we'll see what happens. Thanks again. Vicki > > > >I'm curious as to what kind of side effects you are going through? > >If you wouldn't mind sharing? > > > >It seems like the longer I am on Gleevec, the harder and more severe > >the side effects. I've been on it 1 1/2 years, and it's getting > >tough sometimes. > > > >My Onc doesn't seem to be concerned about the side effects as long as > >I'm PCRU. So, I feel like I'm banging my head against the wall on > >this one. Whoopee,, I'm PCRU and feel like crap! > > > Hi Lynn, > > I was just at OHSU..........I had my bmb and pending results will start the > BMS trial next week..... > but my reason of course if that I have never reached CCR........which is > not why I am writing you. > > I have been on IM for over 5 years.....had the bad rash the whole first > year..........and high dose, 800mg for 3.5 years.........and my side > effects are getting less and less all the time........but mostly > I hear the opposite. In fact, I have been feeling so well the last 3-4 > months, that it seems like a shame to stop using Gleevec at this point. I > still have some waves of fatigue, but less and most of the other symptoms I > had are nearly gone. > > I have no proof.....but I think my diet has a lot to do with it. Also, Dr. > Druker's nurse Carolyn seemed to agree......she said that 'a lot of > patients just want another pill for the side effects and most of them would > not use good diet and some of the supplements that can help " . > > I don't have a clue how you eat........but I want to share my own > understanding of all this.....because it might help you or someone else. > Gleevec is an acid drug that we keep putting into our body daily. > The blood can't be acid (and Gleevec is going right into the blood) for us > to survive.....so the body draws on our alkaline reserves to neutralize the > blood. These reserves can be drawn down and when this happens........I > think lots of other body areas are stressed...........and this might > account for diarrhea, maybe some of the later bone and joint pain, muscle > cramping, etc............. > > So, I offset this by trying to eat alkaline as possible........and > supplementing with any greens, etc. > I know this makes a big difference for me.......because when I skip them, I > pay a price. One of my > best alkaline treats is watermelon, which I have been eating every day for > several months now. But there are lots of different greens products out > there to try. I know that when I got serious about this, I got rid of my > problem with acid reflux and vomited stomach acid first thing in the AM. > > I do work with a naturopath and there are other supplements I am using (and > none that OHSU has any problem with) but I think that the alkaline diet is > the place to start if you are not eating that way right now. It means less > meat....more veggies and fruits, etc.......but heck, that's healthy eating. > I never even know how to cook 'greens' before....but now I like chard, and > will experiment more with others this summer. Also, you can get a lot of > iron from 'beans and greens' if you are anemic at all. > > Hope this info is interesting or helpful to some...... > C. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 , thanks so much for the diet info. I am on 600 mg per day of Gleevec and still having awful side-effects such as diarrhea, nausea, stomach pain, fatigue, etc. I hadn't heard the info about Gleevec being an acid substance and to eat more alkaline. I love greens and seem to crave fruits and veggies right now--I too love watermelon. My son and I will have to buy one and work on it together--he is a watermelon freak. Thanks for the good info. My counts are hovering right around 18K and not much lower, so not sure what is going on. Dose was increased at Dr Druker's request, and he is being kept informed about my counts, so we'll see what happens. Thanks again. Vicki ____________________ Hi Vicki, It looks like you are responding to a message I wrote to you 2 years ago!! can that be? I think diet is really important to help deal with any of the GI problems that people have with Gleevec or other meds. For the diarrhea, you might benefit from getting more good bacteria in your gut.....which means taking a good probiotic daily (any health food store would have a big selection). You can also eat foods with live cultures, like yogurt and kefir. Maybe your gut would benefit by having more fiber in your diet....you can grind flax seeds to add to drinks, put in cereals, sprinkle on salads, etc. And you can look for high fiber foods also. Most Americans do not get enough fiber in their diet, and there are many health benefits from increasing this. Almost all drugs are acid. To change this in your body, you need a steady dose of alkaline foods to offset the daily acid dose from the drug. You can find lists on the internet that will say what foods are acid and what are alkaline. But you might also benefit from a period of taking some kind of supplement to help with this. One that I used for a time, which really got rid of my acid reflux, was Acid Defense by Garden of Life. It was a powder that I mixed in water and drank twice a day. Again at a health food store, you will find many product options and also books on this subject. As for watermelon, you can now buy small ones.....or if you have a large one, you can actually juice it (in a blender) and freeze it to drink later. I buy a small watermelon once or twice a week right now....one of the benefits of summer!! I am glad that Dr. Druker is advising in your treatment. Best wishes to you. C. Quote Link to comment Share on other sites More sharing options...
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