Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi Jenn: First of all I would not go off my Gleevec. I achieved a CCR in 9 months also. I was diagnosed in 1998, and started Gleevec in 2000, and was in CCR in July of 2001. I have continued to take my Gleevec 400mg.every day. Why would I stop something that has kept me going all these years. I also live in New Jersey. There are not too many good doctors that I know of in NJ. Most people are going into Phila and NY Where do you live in NJ? I am down in the shore area, and I am in the process of switching doctors in April. I am PCRU now. Have you gotten to PCRU? I Thank God Everyday for where I am without a BMT. I wish you continued good response. A. > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I would not recommend going off of Gleevec. I started G;eevec in March 2003 and experienced most of the side effects that you have listed. I also had to take transfusions because the Gleevec was also causing Iron Deficient Anemia. I had transfusions and short Gleevec Vacations to rebuild my RBC. I decided to stay on Gleevec Vacation until my PCR indicated that was losing CCR. That has lasted from June 2008 until now. My PCR counts are slowly rising and I will return to Gleevec when my counts reach .01. There was a study done in England regarding Gleevec Vacations and the majority of those participating had to return to Gleevec within 2 years. I hope your response to Gleevec remains stable. H. > > > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > > Jenn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > Jenn ____________________________________ Hi Jenn, You say you are CCR......what about PCR testing? Once you are CCR, you need to do PCR testing to see how well your leukemia load is further reducing. Did you onc keep testing for CCR with bone marrow biopsies? or some other test? A CMLer deciding to go off Gleevec (or other drug) is like someone with severe diabetes just deciding to stop taking insulin!! It is a bit like Russian roulette. When you stop the drug, gradually (or faster) the leukemia cells will multiply and you do not have a guarantee that the drug will work when you go back on it. The cells could mutate and become resistant to Gleevec and even other drugs. The way that you deal with CML is to keep the leukemia cells at bay and stable...that is all we have right now, there is not a cure. Some people in very controlled studies working with CML specialists are seeing if they can come off drugs.....but these are people who have tested PCRU (undetected on this very sensitive test) for 2+ years before they stop the drug and I am not sure you have even been having this test (you do not mention it). There are ways to try to deal with side effects that might help. And I think it would be good if you could consult with a CML specialist. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi I had same effect as I have been on 400 mg since February 2003 and was PCRU after 9 months. My doc reduced my dosage to 200mg. My last PCR test back in November shows a slight increase 0.017 - start to worry. I am due for a another test I February. I went ahead and start taking 300mg. It is very scary to be off Gleevec. Novartis have a test shows how much gleevec in your system which will help doc to decide if you can be taken of gleevec or take reduced dosage. Another solution for side effect is to split your gleevec in two time a day 200mg each it help me some. I will keep posted when I receive my next PCR results T Dxd Feb 2003 PCRU Sent from my Verizon Wireless BlackBerry [ ] getting off Gleevec Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 hi jenn, i was thinking the same thing you were, going off gleevec, you start thinking of things like " do i really need this anymore " ? i understand. i was dx in march 2000. its been 10 years for me now. after being on gleevec (feb 2002) for 4 months i've been pcr undetectable for almost 8 years now. i went off for a couple weeks just cuz i felt like it, and then i freaked out and started taking it again, and i was a basket case until i got my pcr undetectable again in october. i take it every day for now. maybe in the future i will go off, but the way the world is today i cant take anymore stress so i'm not gonna rock the boat just yet. there were studies in italy and australia. they took some people off of gleevec who were pcr-neg for at least 2 years. 1/2 stayed pcr-neg and 1/2 cml came back, but when they went back on gleevec, their remission returned. the 1/2 that stayed pcr-neg previously had interferon for a while before they took gleevec. so its seems that interferon has a positive role in staying clean. i was on interferon for 1.5 years before they put me on gleevec, the only good thing was i lost a lot of weight, but mentally it wasnt good at all, i am glad i was on it though after hearing about these studies. how would you feel if you went off and cml came back? you'd probably wanna kick urself, and your life is worth more than taking a chance. so far, there are no long term side effects from gleevec, so my advice to you (as i said to myself). take those golden tablets, be thankful and enjoy life without thinking of cml everyday. we are blessed with these meds. there are so many people out there with no options, we r the lucky ones. God bless you,gina > > > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > > Jenn > ____________________________________ > > Hi Jenn, > You say you are CCR......what about PCR testing? Once you are CCR, you need to do PCR testing to see how well your leukemia load is further reducing. Did you onc keep testing for CCR with bone marrow biopsies? or some other test? > > A CMLer deciding to go off Gleevec (or other drug) is like someone with severe diabetes just deciding to stop taking insulin!! It is a bit like Russian roulette. When you stop the drug, gradually (or faster) the leukemia cells will multiply and you do not have a guarantee that the drug will work when you go back on it. The cells could mutate and become resistant to Gleevec and even other drugs. > > The way that you deal with CML is to keep the leukemia cells at bay and stable...that is all we have right now, there is not a cure. Some people in very controlled studies working with CML specialists are seeing if they can come off drugs.....but these are people who have tested PCRU (undetected on this very sensitive test) for 2+ years before they stop the drug and I am not sure you have even been having this test (you do not mention it). There are ways to try to deal with side effects that might help. And I think it would be good if you could consult with a CML specialist. > > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi Jen and all members who live in New Jersey. My daughter uses Dr. A Conde, who is located in St. Barnabas Hospital. He seems to be on top of things. He is with a top group of doctors that specialize in different forms of cancer. Dr. Conde teats my daughter, Robyn for CML. She is now in total remission. For anyone who wants to use him, his phone no. is (973)322-5525 Hugs and hands. Sandi > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > Jenn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Thank you all for your advice and information! I will be seeing a new CML specialist the middle of Feb. I will also be drinking more green tea and looking into finding a nutritionist to help me with a more homiopathic diet. I understand that I run the risk of CML coming back, but I am looking forward to at least a few pain-free days. (FYI- I've been in PCRU for 5 1/2 years.) As for the anxeity of not taking the Gleevec, I'd feel I'd rather deal with that, then the stress of losing my memory and all the pain I'm going through right now. Even if it only lasts a little while, I just want a chance to see what my body can do on its own. If the leukemia starts to come back, I will go right back on the Gleevec, but I want the chance to find out. And who knows, maybe one day I can become someone's mommy! Thanks again and I will let you know what happens after my appointment! Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 Hi : We all wish it was that simple. If all we had to do was drink Green Tea, we would all be doing great. I drink Green Tea everyday, but I know I need the Gleevec. You were just diagnosed with CML, and I wish you the best with your pregnancy. May God Bless You With a Healthy Baby. Please continue to be monitored, and I am sure you will need further treatment after you give birth. You said this will be your 4th child. I wish I could say you will be able to continue raising these children by not having treatment. You will need treatment so that you can continue to live a full life to raise your children. Please make sure you take care of yourself before and after your new baby comes. God Bless You A. > > > > Hello all! I've been on Gleevec for CML since April 2003. Within 9 months I reached CCR and have stayed there ever since. I still experience bone and muscle pain, muscle spasms, fatigue, and various other side effects. I spoke to my onc about stopping the Gleevec and he was not happy with that. He seems to think that by doing this I'm risking my life. I feel that IF the CML were to return I can easily go back on Gleevec or I know I have other options. Has anyone else gone off Gleevec and stayed in remission without the aid of other meds? I live in Jersey. Can anyone reccomend a CML specialist? Thanks for your help! > > Jenn > ____________________________________ > > Hi Jenn, > You say you are CCR......what about PCR testing? Once you are CCR, you need to do PCR testing to see how well your leukemia load is further reducing. Did you onc keep testing for CCR with bone marrow biopsies? or some other test? > > A CMLer deciding to go off Gleevec (or other drug) is like someone with severe diabetes just deciding to stop taking insulin!! It is a bit like Russian roulette. When you stop the drug, gradually (or faster) the leukemia cells will multiply and you do not have a guarantee that the drug will work when you go back on it. The cells could mutate and become resistant to Gleevec and even other drugs. > > The way that you deal with CML is to keep the leukemia cells at bay and stable...that is all we have right now, there is not a cure. Some people in very controlled studies working with CML specialists are seeing if they can come off drugs.....but these are people who have tested PCRU (undetected on this very sensitive test) for 2+ years before they stop the drug and I am not sure you have even been having this test (you do not mention it). There are ways to try to deal with side effects that might help. And I think it would be good if you could consult with a CML specialist. > > C. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2010 Report Share Posted January 30, 2010 Thanks and I have every intention of being careful. I haven't read too much lately about , but I do know she had a healthy first pregnancy. (I'm assuming you're talking about the Glamour mag. writer, right?) Jenn > > > From: JennE <cml4103@...> > Subject: [ ] Re: getting off Gleevec > > Date: Thursday, January 28, 2010, 2:10 PM > > > Â > > > > > Thank you all for your advice and information! I will be seeing a new CML specialist the middle of Feb. I will also be drinking more green tea and looking into finding a nutritionist to help me with a more homiopathic diet. I understand that I run the risk of CML coming back, but I am looking forward to at least a few pain-free days. (FYI- I've been in PCRU for 5 1/2 years.) As for the anxeity of not taking the Gleevec, I'd feel I'd rather deal with that, then the stress of losing my memory and all the pain I'm going through right now. Even if it only lasts a little while, I just want a chance to see what my body can do on its own. If the leukemia starts to come back, I will go right back on the Gleevec, but I want the chance to find out. And who knows, maybe one day I can become someone's mommy! Thanks again and I will let you know what happens after my appointment! > Jenn > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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