Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I'm confused....I thought a bone marrow transplant was a cure for CML. What the heck? You mean it can still come back? From: Judy Telford <judy_telford@...> Subject: [ ] notalib Date: Thursday, February 19, 2009, 3:50 PM Hi I read the site always but don't often post. I had a bonemarrow transplant for cml in 1993, I relapsed in 2004 and have been taking glivec since. My initial response to glivec was slow so it was increased from 400 to 600 mg per day. I have also had donor lymphacite infusions to see if I can once again reach zero ph. My pcr has been steadily dropping to hover around zero, but not conclusively all gone. The last 3 tests were equivocal, 0.00 and equivocal again. According to the dictionary, equivocal means uncertain or suspicious. My doctor has suggested that it may be a good time to try another drug to see if I can reach complete remission again. He is suggesting I think about notalib ( I think that is the spelling) with the hope this will remove the lingering cml cells. Does any one on this site take this drug and what are the side effects. According to my doctor, the this drug is far better tolerated than glivec and is far more potent. I would be interested to hear what others say about the drug, and I guess I am wondering what I should do, any thoughts would be greatly appreciated. Judy T Make 7 your homepage and win a trip to the Quiksilver Pro. Find out more Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 No I'm afraid transplant is not always a cure. I was in remission for 11 years and the doctors thought I was cured, but unfortunately a routine blood test showed my marrow had regenerated and my marrow still has cml. Glivec has reduced my marrow to very small levels again so that my donor marrow is dominant, but unfortunately I still have some cml cells floating around. A small percentage of transplant patients relapse, usually in the first few years post transplant. It is quite unusual to relapse so long after transplant. By the way the drug is nilotinib, would love to hear from people who take it Judy T> > > > > Hi I read the site always but don't often post. I had a bonemarrow transplant for cml in 1993, I relapsed in 2004 and have been taking glivec since. My initial response to glivec was slow so it was increased from 400 to 600 mg per day. I have also had donor lymphacite infusions to see if I can once again reach zero ph. My pcr has been steadily dropping to hover around zero, but not conclusively all gone. The last 3 tests were equivocal, 0.00 and equivocal again. According to the dictionary, equivocal means uncertain or suspicious. My doctor has suggested that it may be a good time to try another drug to see if I can reach complete remission again. He is suggesting I think about notalib ( I think that is the spelling) with the hope this will remove the lingering cml cells. Does any one on this site take this drug and what are the side effects. According to my doctor, the this drug is far better tolerated than glivec and is far more > potent. I would be interested to hear what others say about the drug, and I guess I am wondering what I should do, any thoughts would be greatly appreciated. > Judy T > > Make 7 your homepage and win a trip to the Quiksilver Pro. Find out more > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Judy, I take Nilotinip but Icall it Tasigna. It will be l yeara in March since I started taking it. I was dx in 2004 and started with Gleevec. Could not tolerate it and went to Sprycel. Good for three years t hen got plural Effusion and other bad side effects. Went on Tasigna and in three months was PCRU with a 5 log reduction and have been feeling just great. No side effects except weight gain but I work on that A little muscle ached now and then but nothing to worry about. I have thinning of my hair but it is now coming back. I am very happy, no depression and feel normal. I would not even know I have CML. I am one of the lucky ones. I take no other medications except calcium and D. I think I am one of the lucky ones. But there are several of us that are on Tasigna and doing well. I am also 66 years old and very active. And I have 13 grand children. I have pictures posted on the site. It is always good to put a face with name. Hope this has helped. I would encourage you to take it. Aloha Sharon _____ From: [mailto: ] On Behalf Of Judy Telford Sent: Thursday, February 19, 2009 3:51 PM Subject: [ ] notalib Hi I read the site always but don't often post. I had a bonemarrow transplant for cml in 1993, I relapsed in 2004 and have been taking glivec since. My initial response to glivec was slow so it was increased from 400 to 600 mg per day. I have also had donor lymphacite infusions to see if I can once again reach zero ph. My pcr has been steadily dropping to hover around zero, but not conclusively all gone. The last 3 tests were equivocal, 0.00 and equivocal again. According to the dictionary, equivocal means uncertain or suspicious. My doctor has suggested that it may be a good time to try another drug to see if I can reach complete remission again. He is suggesting I think about notalib ( I think that is the spelling) with the hope this will remove the lingering cml cells. Does any one on this site take this drug and what are the side effects. According to my doctor, the this drug is far better tolerated than glivec and is far more potent. I would be interested to hear what others say about the drug, and I guess I am wondering what I should do, any thoughts would be greatly appreciated. Judy T Make 7 your homepage and win a trip to the Quiksilver Pro. Find out more Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Thanks Sharon, that is very encouraging, I'm 57 and very active, I really don't have any side effects from Glivec, just haven't had the optimal response. I'm really glad to hear you have no side effects to speak of, and that you are pcru, that is great news Judy T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Judy, I think you will find the answer to your question in the following paper: http://www.cancereducation.com/cancersyspagesnb/a/lls/lls0803new/lls0803_Tra nscriptFull.pdf Take the time to read it all. You will find that as long as you are stable at CCR over a long period of time your chances of relapsing to AP or BC are practicly zero. These are the opinions of Dr. Druker and Dr. Shaw. In addition, it is pretty clear that none of the current drugs are a cure for CML so there is no point in increasing a dose or switching to a different drug to try and get to a cure. My suggestion would be to stay on a drug that gives you the best quality of life while you (and all of us) wait for the cure to come. Switching drugs in the hope that it will work doesn't sit well with me. It should be done based on scientific evidence. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 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 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Judy Telford Sent: February-19-09 6:51 PM Subject: [ ] notalib Hi I read the site always but don't often post. I had a bonemarrow transplant for cml in 1993, I relapsed in 2004 and have been taking glivec since. My initial response to glivec was slow so it was increased from 400 to 600 mg per day. I have also had donor lymphacite infusions to see if I can once again reach zero ph. My pcr has been steadily dropping to hover around zero, but not conclusively all gone. The last 3 tests were equivocal, 0.00 and equivocal again. According to the dictionary, equivocal means uncertain or suspicious. My doctor has suggested that it may be a good time to try another drug to see if I can reach complete remission again. He is suggesting I think about notalib ( I think that is the spelling) with the hope this will remove the lingering cml cells. Does any one on this site take this drug and what are the side effects. According to my doctor, the this drug is far better tolerated than glivec and is far more potent. I would be interested to hear what others say about the drug, and I guess I am wondering what I should do, any thoughts would be greatly appreciated. Judy T Make 7 your homepage and win a trip to the Quiksilver Pro. Find out more Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi Judy, The drug Nilotinib is called Tasigna and we have many members on it from this group. If you search " Tasigna " in the search engine on the first page of the group, you'll get all the posts that deal with this drug. By the way, I wouldn't say that you've had suboptimal response to Gleevec, I'd say that you've had a fantastic response, exactly the response that we all hope for. Take care, Tracey > > Thanks Sharon, that is very encouraging, I'm 57 and very active, I > really don't have any side effects from Glivec, just haven't had the > optimal response. I'm really glad to hear you have no side effects to > speak of, and that you are pcru, that is great news > Judy T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 G'day Judy from a fellow aussie. I have been on Tasigna (Nilotinib) for 6 months now and just love it. I have had no side effects except for a little fatigue and work a very busy job full time. I am also the carer of my husband who had a brain stem stroke last September. I've had fantastic response to Tasigna as you can see by my PCR's below. It must have been devastating for you to have the disease return after all that time. Best of luck, but as Tracey and Zavie pointed out, you are doing well on Glivec. Regards, from Down Under #1149 Zavies Zero Club Dx: 25/07/07 Commenced Glivec 400mg 27/9/07 Changed to Tasigna 800mg 3/8/08 PCRs: 23/01/08 - 13.01 % 14/04/08 - 0.08 % 12/05/08 - 0.02% (Glivec 200mg) 06/08/08 - 0.09 % (commenced Tasigna) 30/09/08 - 0.18 % 19/12/08 - 0.00% From: [mailto: ] On Behalf Of Judy Telford Sent: Friday, 20 February 2009 5:39 PM Subject: Re: [ ] notalib No I'm afraid transplant is not always a cure. I was in remission for 11 years and the doctors thought I was cured, but unfortunately a routine blood test showed my marrow had regenerated and my marrow still has cml. Glivec has reduced my marrow to very small levels again so that my donor marrow is dominant, but unfortunately I still have some cml cells floating around. A small percentage of transplant patients relapse, usually in the first few years post transplant. It is quite unusual to relapse so long after transplant. By the way the drug is nilotinib, would love to hear from people who take it Judy T> > > > > Hi I read the site always but don't often post. I had a bonemarrow transplant for cml in 1993, I relapsed in 2004 and have been taking glivec since. My initial response to glivec was slow so it was increased from 400 to 600 mg per day. I have also had donor lymphacite infusions to see if I can once again reach zero ph. My pcr has been steadily dropping to hover around zero, but not conclusively all gone. The last 3 tests were equivocal, 0.00 and equivocal again. According to the dictionary, equivocal means uncertain or suspicious. My doctor has suggested that it may be a good time to try another drug to see if I can reach complete remission again. He is suggesting I think about notalib ( I think that is the spelling) with the hope this will remove the lingering cml cells. Does any one on this site take this drug and what are the side effects. According to my doctor, the this drug is far better tolerated than glivec and is far more > potent. I would be interested to hear what others say about the drug, and I guess I am wondering what I should do, any thoughts would be greatly appreciated. > Judy T > > Make 7 your homepage and win a trip to the Quiksilver Pro. Find out more > > Quote Link to comment Share on other sites More sharing options...
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