Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Vicki: I am sure you will hear different opinions on this. My oncologist at MD is one that feels that you should be on higher doses, as certain reports show that a quicker response shows better long term results. But there are people on this site who have been a minimal doses, responded more slowly and are doing very well. So I am not sure that the " higher is better " school of thought is best. I will say that I have been on doses as high as 800 mg and the side effects are more prevelant and your QOL diminished, if you experience the side effects. I prefer life on the lower doses much better than I did on the higher doses. My best regards, Matt Florida In a message dated 1/24/2007 1:39:31 PM Eastern Standard Time, vickistu@... writes: My heme/Onc has told me I am a " slow responder " to Gleevec, but not to worry--it is working. I am wondering if I need to be on a higher dose or what? I don't like the slowness of the response--it worries me that somehow I am resistant to the good effects of the drug. I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since that date. My counts are gradually drifting downward, sometimes upward, then back down again--and I am still not at normal wbc counts (that is mainly what I watch). Does anybody else have experience like this? Should I ask to be on a higher dose? My doc says that even if it takes 4 years to get to normal counts--people who take that long do just as well long-term as people who respond quickly. I have not read enough to know if that is true, and thought I'd ask around this group to see if anybody knows if that is the case? I don't want to develop a resistance to the Gleevec, and if taking it at higher doses would make it work better and faster, and if over the long run that is a good thing, then I want to do that. Also, what about clinical trials? I am seeing a doctor in a smaller suburban heme-onc practice. Should I go for the big downtown practice which has the clinical trials or stay where I am care-wise? It is very much a dilemma for me since I love my doctor and she seems quite knowledgeable, although she admitted to me that she only had 5 CML patients, and I am one of the 5. Thanks for your input. It really helps to hear somebody's opinion who has been through similar things. I am battling lots of side effects and depression, and members of the group have helped me tremendously in terms of seeing that this disease is more manageable than I had dreamed, and truly not an " end of life " kind of situation. How magnificent a gift that was and is every single day! Thank you so much to all. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Now, that sounds like a wonderful idea. Take matters in your own hands and find the care you need and as Zavie put it, find an expert. My local oncologist has 7 CML patients, 25 Leukemia patients, but will always defer to MDACC for treatment protocals. He is on line with them constantly asking questions. He has very little ego and does not feel he needs to " run the show " . Matt In a message dated 1/24/2007 3:27:45 PM Eastern Standard Time, vickistu@... writes: Thanks Matt! I think I might need to switch doctors and see what one with more experience and a larger practice might have to say about this matter of dosage...it seems like there are a lot of varying opinions and my doctor is rather set in her ways. She is wonderful but I am just afraid it might be affecting her ability to be up on the latest info and she doesn't seem all that receptive to me making suggestions about how my care should go--she pretty much wants to run the show. I know MD is a major cancer center, and I would respect their judgment on this matter very much. Thanks again for the helpful info. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Hi Vickie, Here is my best advice in your situation. You need to see a CML specialist!!! Tell us where you live and we can recommend someone who is close to you. My quick definition of a CML specialist: A doctor who has successfully treated 1000 CML patients. I would like to see the paper and the clinical trial that your doctor based her comment on taking 4 years to reach normal counts. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Slow Responder My heme/Onc has told me I am a " slow responder " to Gleevec, but not to worry--it is working. I am wondering if I need to be on a higher dose or what? I don't like the slowness of the response--it worries me that somehow I am resistant to the good effects of the drug. I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since that date. My counts are gradually drifting downward, sometimes upward, then back down again--and I am still not at normal wbc counts (that is mainly what I watch). Does anybody else have experience like this? Should I ask to be on a higher dose? My doc says that even if it takes 4 years to get to normal counts--people who take that long do just as well long-term as people who respond quickly. I have not read enough to know if that is true, and thought I'd ask around this group to see if anybody knows if that is the case? I don't want to develop a resistance to the Gleevec, and if taking it at higher doses would make it work better and faster, and if over the long run that is a good thing, then I want to do that. Also, what about clinical trials? I am seeing a doctor in a smaller suburban heme-onc practice. Should I go for the big downtown practice which has the clinical trials or stay where I am care-wise? It is very much a dilemma for me since I love my doctor and she seems quite knowledgeable, although she admitted to me that she only had 5 CML patients, and I am one of the 5. Thanks for your input. It really helps to hear somebody's opinion who has been through similar things. I am battling lots of side effects and depression, and members of the group have helped me tremendously in terms of seeing that this disease is more manageable than I had dreamed, and truly not an " end of life " kind of situation. How magnificent a gift that was and is every single day! Thank you so much to all. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Hi Zavie, thanks for the input. I live just north of Seattle in a suburb called Lynnwood, and I actually work in downtown Seattle at the largest hospital in Washington State, Swedish Medical Center, so there ought to be some good doctors here, though I haven't really researched this much--isn't that stupid? A doctor affiliated with my very own hospital, I believe is one of the participants in one of the Gleevec trials here. He is whom I was thinking of changing to. If you know the name of a good/great doctor in Seattle, please let me know--that is great info to have. I have great insurance that covers just about anybody I might wish to see, so that is no problem. I have had a sneaking suspicion that there might be advantages to have someone more familiar with the disease, too, although I don't want to hurt my doctor's feelings or anything--I am one of those " eager to pleasers, " and sometimes that works against me, sad to say. I don't know in what study my doctor found this info about slow- responders doing just as well--she didn't actually quote a specific study, but just stated this as though it were a well-known fact. Thanks again for the caring input. Much appreciated! Vicki > > Hi Vickie, > > Here is my best advice in your situation. > > You need to see a CML specialist!!! > > Tell us where you live and we can recommend someone who is close to you. > > My quick definition of a CML specialist: A doctor who has successfully > treated 1000 CML patients. > > I would like to see the paper and the clinical trial that your doctor based > her comment on taking 4 years to reach normal counts. > > Zavie > > Zavie (age 68) > 67 Shoreham Avenue > Ottawa, Canada, dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > PCRU 5/02 at RVH > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > > [ ] Slow Responder > > My heme/Onc has told me I am a " slow responder " to Gleevec, but not > to worry--it is working. I am wondering if I need to be on a higher > dose or what? I don't like the slowness of the response--it worries > me that somehow I am resistant to the good effects of the drug. > > I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since > that date. My counts are gradually drifting downward, sometimes > upward, then back down again--and I am still not at normal wbc counts > (that is mainly what I watch). Does anybody else have experience > like this? Should I ask to be on a higher dose? My doc says that > even if it takes 4 years to get to normal counts--people who take > that long do just as well long-term as people who respond quickly. I > have not read enough to know if that is true, and thought I'd ask > around this group to see if anybody knows if that is the case? > > I don't want to develop a resistance to the Gleevec, and if taking it > at higher doses would make it work better and faster, and if over the > long run that is a good thing, then I want to do that. Also, what > about clinical trials? I am seeing a doctor in a smaller suburban > heme-onc practice. Should I go for the big downtown practice which > has the clinical trials or stay where I am care-wise? It is very > much a dilemma for me since I love my doctor and she seems quite > knowledgeable, although she admitted to me that she only had 5 CML > patients, and I am one of the 5. > > Thanks for your input. It really helps to hear somebody's opinion > who has been through similar things. I am battling lots of side > effects and depression, and members of the group have helped me > tremendously in terms of seeing that this disease is more manageable > than I had dreamed, and truly not an " end of life " kind of > situation. How magnificent a gift that was and is every single day! > Thank you so much to all. > Vicki > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Thanks Matt! I think I might need to switch doctors and see what one with more experience and a larger practice might have to say about this matter of dosage...it seems like there are a lot of varying opinions and my doctor is rather set in her ways. She is wonderful but I am just afraid it might be affecting her ability to be up on the latest info and she doesn't seem all that receptive to me making suggestions about how my care should go--she pretty much wants to run the show. I know MD is a major cancer center, and I would respect their judgment on this matter very much. Thanks again for the helpful info. Vicki > > > Vicki: > > I am sure you will hear different opinions on this. My oncologist at MD > is one that feels that you should be on higher doses, as certain > reports show that a quicker response shows better long term results. But there are > people on this site who have been a minimal doses, responded more slowly and > are doing very well. So I am not sure that the " higher is better " school of > thought is best. > > I will say that I have been on doses as high as 800 mg and the side effects > are more prevelant and your QOL diminished, if you experience the side > effects. I prefer life on the lower doses much better than I did on the higher > doses. > > My best regards, > > Matt > Florida > > > In a message dated 1/24/2007 1:39:31 PM Eastern Standard Time, > vickistu@... writes: > > > > > My heme/Onc has told me I am a " slow responder " to Gleevec, but not > to worry--it is working. I am wondering if I need to be on a higher > dose or what? I don't like the slowness of the response--it worries > me that somehow I am resistant to the good effects of the drug. > > I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since > that date. My counts are gradually drifting downward, sometimes > upward, then back down again--and I am still not at normal wbc counts > (that is mainly what I watch). Does anybody else have experience > like this? Should I ask to be on a higher dose? My doc says that > even if it takes 4 years to get to normal counts--people who take > that long do just as well long-term as people who respond quickly. I > have not read enough to know if that is true, and thought I'd ask > around this group to see if anybody knows if that is the case? > > I don't want to develop a resistance to the Gleevec, and if taking it > at higher doses would make it work better and faster, and if over the > long run that is a good thing, then I want to do that. Also, what > about clinical trials? I am seeing a doctor in a smaller suburban > heme-onc practice. Should I go for the big downtown practice which > has the clinical trials or stay where I am care-wise? It is very > much a dilemma for me since I love my doctor and she seems quite > knowledgeable, although she admitted to me that she only had 5 CML > patients, and I am one of the 5. > > Thanks for your input. It really helps to hear somebody's opinion > who has been through similar things. I am battling lots of side > effects and depression, and members of the group have helped me > tremendously in terms of seeing that this disease is more manageable > than I had dreamed, and truly not an " end of life " kind of > situation. How magnificent a gift that was and is every single day! > Thank you so much to all. > Vicki > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 At 06:28 PM 1/24/07 +0000, you wrote: >I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since >that date. My counts are gradually drifting downward, sometimes >upward, then back down again--and I am still not at normal wbc counts >(that is mainly what I watch). Hi Vicki, You live close enough to Portland, OR to see one of the very best CML doctors, who happened to develop Gleevec........Dr. Druker. When you have a potentially life threatening disease, you need the best doctor you can reach.....and it is not about 'liking your doctor' or 'hurting their feelings'............ It sounds like your present onc. does not know enough. Here is a problem you are having.......if you are not getting a hematological response within the first 3 months, and you are about at this point now........this drug or this dose is not working well enough for you. This is not resistance....it just is not working. You don't actually say what the swing is in your white count....if it is always in the normal range or even below.....then that is OK. But within 3 months, your blood counts (all of them) should be in the normal range (or some might be low)......this is a hematological response to the drug. You can probably also find a good onc in Seattle, but you are so close to Portland and you would only have to go every 3 months usually, and your local onc would do more frequent blood tests and fax them to Dr. Druker. Many people on this list have traveled across the country to see him. that's my 2-cents, C. a patient of OHSU/Dr. Druker for 7 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 , now that is a great idea! I have wanted to meet Dr Druker, just to thank him for his work--but to actually see him would be incredible. It is funny--my husband actually made a joke about that when I was first diagnosed, but then he later told me he thought it would be great to go see Dr Druker and just see what he thought. I think we might just do that! Thanks for the great brainstorming on my behalf! Your 2 cents worth is much appreciated, and may be worth much more than 2 cents! VIcki > >I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since > >that date. My counts are gradually drifting downward, sometimes > >upward, then back down again--and I am still not at normal wbc counts > >(that is mainly what I watch). > > > Hi Vicki, > You live close enough to Portland, OR to see one of the very best CML doctors, > who happened to develop Gleevec........Dr. Druker. When you have a > potentially life threatening disease, you need the best doctor you can > reach.....and it is not about 'liking your doctor' or 'hurting their > feelings'............ > > It sounds like your present onc. does not know enough. > Here is a problem you are having.......if you are not getting a > hematological response within the first 3 months, and you are about at this > point now........this drug or this dose is not working well enough for you. > This is not resistance....it just is not working. You don't actually say > what the swing is in your white count....if it is always in the normal > range or even below.....then that is OK. > > But within 3 months, your blood counts (all of them) should be in the > normal range (or some might be low)......this is a hematological response > to the drug. You can probably also find a good onc in Seattle, but you are > so close to Portland and you would only have to go every 3 months usually, > and your local onc would do more frequent blood tests and fax them to Dr. > Druker. Many people on this list have traveled across the country to see him. > > that's my 2-cents, > C. > a patient of OHSU/Dr. Druker for 7 years. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 At 09:44 PM 1/24/07 +0000, you wrote: >, now that is a great idea! I have wanted to meet Dr Druker, >just to thank him for his work--but to actually see him would be >incredible. It is funny--my husband actually made a joke about that >when I was first diagnosed, but then he later told me he thought it >would be great to go see Dr Druker and just see what he thought. I >think we might just do that! Thanks for the great brainstorming on >my behalf! Your 2 cents worth is much appreciated, and may be worth >much more than 2 cents! Vicki, You could ask your present onc to make the referral and get the appointment set up or you can actually call and do it yourself.............but you do want a home 'onc', whether that it present one (if she will play 2nd fiddle!) or another one.......or even just a place to get blood work. I live 100mi from Portland in Eugene, OR....I do have an onc here....who I really never see. I have a standing order for bloodwork at a lab that is faxed to OHSU and then I see Dr. D every 3 months (I have almost always been on a trial). If you can't get into Dr. D soon enough to suit you, the other 2 CML specialists (Mauro, and Deininger ?sp) are also great. Let me know if you need a phone # at all. PS A good home onc welcomes the chance to co-Rx a patient with a specialist like Dr. Druker....if she is offended it is her own insecurity. Here is her chance to learn more about CML and Rx. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 My counts plummeted after starting Gleevec. I was on 300mg of Allopurinol (anti Gout) weeks before even starting Gleevec and was just about crippled from gout. The gout stuck around for over a month!!! Now, I'm having issues with keeping my counts from being too low. I had to take a week off just to get my neutrophils up to a respectable level. I've been concerned that Gleevec isn't going to work for me because it seems to be too strong. My Onc thinks my good cells just need to catch up with the displacement of the leukemic cells. dx 7/13 with 196WBC > > > Vicki: > > I am sure you will hear different opinions on this. My oncologist at MD > is one that feels that you should be on higher doses, as certain > reports show that a quicker response shows better long term results. But there are > people on this site who have been a minimal doses, responded more slowly and > are doing very well. So I am not sure that the " higher is better " school of > thought is best. > > I will say that I have been on doses as high as 800 mg and the side effects > are more prevelant and your QOL diminished, if you experience the side > effects. I prefer life on the lower doses much better than I did on the higher > doses. > > My best regards, > > Matt > Florida > > > In a message dated 1/24/2007 1:39:31 PM Eastern Standard Time, > vickistu@... writes: > > > > > My heme/Onc has told me I am a " slow responder " to Gleevec, but not > to worry--it is working. I am wondering if I need to be on a higher > dose or what? I don't like the slowness of the response--it worries > me that somehow I am resistant to the good effects of the drug. > > I was diagnosed 10/04/06 and have been taking 400 mg of Gleevec since > that date. My counts are gradually drifting downward, sometimes > upward, then back down again--and I am still not at normal wbc counts > (that is mainly what I watch). Does anybody else have experience > like this? Should I ask to be on a higher dose? My doc says that > even if it takes 4 years to get to normal counts--people who take > that long do just as well long-term as people who respond quickly. I > have not read enough to know if that is true, and thought I'd ask > around this group to see if anybody knows if that is the case? > > I don't want to develop a resistance to the Gleevec, and if taking it > at higher doses would make it work better and faster, and if over the > long run that is a good thing, then I want to do that. Also, what > about clinical trials? I am seeing a doctor in a smaller suburban > heme-onc practice. Should I go for the big downtown practice which > has the clinical trials or stay where I am care-wise? It is very > much a dilemma for me since I love my doctor and she seems quite > knowledgeable, although she admitted to me that she only had 5 CML > patients, and I am one of the 5. > > Thanks for your input. It really helps to hear somebody's opinion > who has been through similar things. I am battling lots of side > effects and depression, and members of the group have helped me > tremendously in terms of seeing that this disease is more manageable > than I had dreamed, and truly not an " end of life " kind of > situation. How magnificent a gift that was and is every single day! > Thank you so much to all. > Vicki > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 , Thanks for the good info! I agree--a doctor should welcome the chance to hear from Dr Druker or anyone of his caliber. I think my doctor will play ball--she is really smart, but just hasn't had a lot of experience with the illness or Gleevec. So, we will see. I think my insurance will even cover him. I have been looking at OHSU website and it looks fantastic. My husband is excited about the trip and so am I. By the way, my niece is attending UofO in Eugene--and my brother-in- law's father used to be Dean there--Dr Burton Moyer (back in the 1970s), so it is a town we know and love! My father-in-law grew up in Coos Bay--sort of a family connection with Oregon, you might say, and now one more! Thanks again. Vicki > >, now that is a great idea! I have wanted to meet Dr Druker, > >just to thank him for his work--but to actually see him would be > >incredible. It is funny--my husband actually made a joke about that > >when I was first diagnosed, but then he later told me he thought it > >would be great to go see Dr Druker and just see what he thought. I > >think we might just do that! Thanks for the great brainstorming on > >my behalf! Your 2 cents worth is much appreciated, and may be worth > >much more than 2 cents! > > Vicki, > You could ask your present onc to make the referral and get the appointment > set up or you can actually call and do it yourself.............but you do > want a home 'onc', whether that it present one (if she will play 2nd > fiddle!) or another one.......or even just a place to get blood work. I > live 100mi from Portland in Eugene, OR....I do have an onc here....who I > really never see. I have a standing order for bloodwork at a lab that is > faxed to OHSU and then I see Dr. D every 3 months (I have almost always > been on a trial). If you can't get into Dr. D soon enough to suit you, the > other 2 CML specialists (Mauro, and Deininger ?sp) are also great. Let me > know if you need a phone # at all. > > PS A good home onc welcomes the chance to co-Rx a patient with a > specialist like Dr. Druker....if she is offended it is her own insecurity. > Here is her chance to learn more about CML and Rx. > > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 JAMES DXT THIS YEAR! that is a high count to bleed off.My wbc was 154,ooo really felt bad for 2 weeks.dxt 12-06 PAUL TN. ----- Original Message ---- ________________________________________________________________________________\ ____ TV dinner still cooling? Check out " Tonight's Picks " on TV. http://tv./ Quote Link to comment Share on other sites More sharing options...
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