Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Hi Jeanie, I was just wondering why it took so long for you to try a new a drug when there were clear signs of problems for over a year? Sprycel and Tasigna have been available for well over a year so I really don't understand why your doctor waited for you to go into accelerated phase before taking action. This seems rather irresponsible to me and is precisely why we have PCR's so often, to make sure that we take action at the earliest sign of trouble. The earlier we catch a problem, the better our chance of responding is. Chronic phase CML is much easier to treat than the advanced phases. Take care, Tracey > > > Hi SharonS. > I'm sorry you are having so many side effects. > I was dx in Jan of 2004 and started Gleevec in Feb 2004. > I had a lot of side effects, and I just hung in there and fought. > I even had boils that hurt a lot. > With every side effect, I knew I had to hang tough. > I had swollen eyes, eye bleed, red face, weight gain, boils, back ache; you > name it and I had it. > I never reached remission. > Then last year, my counts started rising especially my platelets and then my > WBC; I started looking real white( was wishing I had my red face back) and > about 3 weeks ago,they found blast in my blood. > It wasn't looking good, and I was feeling awful. > So, they stopped Gleevec and put me on Tasigna. > I have been on Tasigna for about 16 days, all my counts have dropped, but > not to bad, and as I said, I'm fighting this CML, along with God on my side. > What I'm trying to say, is hang in there CML WARRIOR. > Take each side effect and deal with as best you can. > If you're tired, rest. > I use to fight being tired, but I quit that. > Take some time for yourself and pamper yourself. > Watch you diet; eat the best foods from all the food groups. > Keep a diary; this helps me a lot. > The side effects will get better with time and you will learn how to manage > them. > This group will help you through this. Tell us about your side effects and > there are some good people on this list that can give you some good advice. > Blessings, > Jeanie<3 > In a message dated 10/7/2008 9:24:26 P.M. Pacific Daylight Time, > serenitywon@... writes: > > > > > Hello, > I was DX May 08.I am not to remission yet.I take 600 mg Gleevec > daily.I was taking 400 mg I have been on 600 for about 6 weeks now.I > am having swelling around eyes.My skin especially my face is red.It > looks like I wore goggles and went snow sking and got snow burned.I > have a few small blister type dry skin patches mostly on my face. > For the past 6 weeks or so I have had this " pulled muscle " feeling > in my right thigh front side.My Dr. feels it is from taking gleevec > with Zocor which is on the list of " don't Take " while on gleevec.He > feels I am over dosing on the zocor(due to gleevec somehow) and that > is causing the problem.I was advised to DC the zocor.I have major > increase in muscle and joint/bone pain.I already was taking M.S. > Contin twic daily and Norco 3 times daily.I am still in alot of > pain.Increased pain since DX. > My next issue seems to be weight gain while dieting.I have in the > last 7 days or so gained an average of 1-2 pounds a day for a total > gain of 14.5 pounds in less than 2 weeks.Again.gain of 14.5 pounds in > all food and calorie intake.I have an obvious distended abdomen.I > look 6 months prego and I am NOT. > > My Dr.wanted to increase my dosage of gleevec to 800 mg but is > holding off due to my issues of weight gain,pain,rash like > symptoms,occasion diharea while I usually have constipation,symptoms,o > etc.I am frustrated and tired of hurting already and I haven't even > been DX for very long. > > Quality of life sucks currently.I wonder what is the point of getting > to remission if i am going to feel like this daily and be bed ridden > and all.Guess I just need to vent some nt that it will change a darn > thing..lol > > Anyone know how long a person can live with CML WITHOUT any > treatment? Seems like the treatment is worse than the illness..UGH > Thanks > SharonS Sorry this wasn't such a positive post.. > > > > > > > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out! > (http://local.mapquest.com/?ncid=emlcntnew00000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Hi Tracey, Yes, I kept telling him to do a PCR, but he wanted to do a BMA and BMB. I think he waited much to long also. I kept asking him if I should take something extra for the high platelets, but he always said no. He upped my Gleevec, and I think he was hoping that would do it. I'm hoping the Tasiga will put me in remission. What really brought this all to a head was that a cpn blood test done by my PCD showed a high elevation of potassium. He gave something to lower it, and I've been sick ever since. I tried to tell him it was the Gleevec and needed to be address by my onc, but he insisted on treating it. Never again will I listen to a PCD unless I also have the input of my onc. Thanks for all your input. Jeanie<3 In a message dated 10/8/2008 10:00:11 A.M. Pacific Daylight Time, traceyincanada@... writes: Hi Jeanie, I was just wondering why it took so long for you to try a new a drug when there were clear signs of problems for over a year? Sprycel and Tasigna have been available for well over a year so I really don't understand why your doctor waited for you to go into accelerated phase before taking action. This seems rather irresponsible to me and is precisely why we have PCR's so often, to make sure that we take action at the earliest sign of trouble. The earlier we catch a problem, the better our chance of responding is. Chronic phase CML is much easier to treat than the advanced phases. Take care, Tracey **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Hi Jeanie, It sounds like your doctor doesn't have a clue how to treat CML. I've known hundreds of patients over the years, possibly thousands and I've never heard of anyone not getting any PCR's. Your life literally depends on you getting adequate treatment which includes being monitored properly so I highly encourage you to get a new doctor (like many of us have). I'm sorry if this sounds harsh but you really don't want to be playing Russian Roulette with your life do you? Tracey > > > Hi Tracey, > Yes, I kept telling him to do a PCR, but he wanted to do a BMA and BMB. > I think he waited much to long also. > I kept asking him if I should take something extra for the high platelets, > but he always said no. > He upped my Gleevec, and I think he was hoping that would do it. > I'm hoping the Tasiga will put me in remission. > What really brought this all to a head was that a cpn blood test done by my > PCD showed a high elevation of potassium. He gave something to lower it, and > I've been sick ever since. I tried to tell him it was the Gleevec and > needed to be address by my onc, but he insisted on treating it. > Never again will I listen to a PCD unless I also have the input of my onc. > > Thanks for all your input. > Jeanie<3 > In a message dated 10/8/2008 10:00:11 A.M. Pacific Daylight Time, > traceyincanada@... writes: > > Hi Jeanie, > > I was just wondering why it took so long for you to try a new a drug > when there were clear signs of problems for over a year? > > Sprycel and Tasigna have been available for well over a year so I > really don't understand why your doctor waited for you to go into > accelerated phase before taking action. This seems rather > irresponsible to me and is precisely why we have PCR's so often, to > make sure that we take action at the earliest sign of trouble. The > earlier we catch a problem, the better our chance of responding is. > Chronic phase CML is much easier to treat than the advanced phases. > > Take care, > Tracey > > > > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out! > (http://local.mapquest.com/?ncid=emlcntnew00000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Hi Tracey, I have been with my onc since first being dx 5 years ago. We have gone through many trials together and he is always there for me. When I call his office, I don't get an answering machine, I get a real live person. I get my blood results the next day, and if anything is wrong, he calls me right away. I just like him and the way he treats me, so I'm sticking with him. He will start giving me PCRS soon. Thanks again for all you help. Blessings, Jeanie<3 In a message dated 10/8/2008 6:47:32 P.M. Pacific Daylight Time, traceyincanada@... writes: Hi Jeanie, It sounds like your doctor doesn't have a clue how to treat CML. I've known hundreds of patients over the years, possibly thousands and I've never heard of anyone not getting any PCR's. Your life literally depends on you getting adequate treatment which includes being monitored properly so I highly encourage you to get a new doctor (like many of us have). I'm sorry if this sounds harsh but you really don't want to be playing Russian Roulette with your life do you? Tracey **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out (http://local.mapquest.com/?ncid=emlcntnew00000002) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2008 Report Share Posted October 10, 2008 Hi Jeanie, You said that you like your doctor because of the way he treats you but the reality is that he put your life in danger by not monitoring you properly. You said that you asked him repeatedly to do PCR's and yet he ignored your requests, so from my perspective (unbiased, objective), I don't think he treated you well at all. You also said that you were showing signs of acceleration for a year before he decided to do something. Again, I don't see this as treating you well, I see this as negligent. The bottom line is that he's not following standard protocols. He might be the nicest guy in the world but does that make it ok for him to jeopardize your life? He should never have let you go into accelerated phase before deciding to do something. I just hope you realize what's at stake by choosing to stay with a doctor who doesn't follow protocols and who seemingly doesn't know very much about CML. Tracey > > > Hi Tracey, > I have been with my onc since first being dx 5 years ago. > We have gone through many trials together and he is always there for me. > When I call his office, I don't get an answering machine, I get a real live > person. > I get my blood results the next day, and if anything is wrong, he calls me > right away. > I just like him and the way he treats me, so I'm sticking with him. > He will start giving me PCRS soon. > Thanks again for all you help. > Blessings, > Jeanie<3 > In a message dated 10/8/2008 6:47:32 P.M. Pacific Daylight Time, > traceyincanada@... writes: > > > > > Hi Jeanie, > > It sounds like your doctor doesn't have a clue how to treat CML. > I've known hundreds of patients over the years, possibly thousands > and I've never heard of anyone not getting any PCR's. > > Your life literally depends on you getting adequate treatment which > includes being monitored properly so I highly encourage you to get a > new doctor (like many of us have). I'm sorry if this sounds harsh but > you really don't want to be playing Russian Roulette with your life > do you? > > Tracey > > > > > > > **************New MapQuest Local shows what's happening at your destination. > Dining, Movies, Events, News & more. Try it out > (http://local.mapquest.com/?ncid=emlcntnew00000002) > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.