Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Holly, I wish you well in the treatment of your CML now that you've advanced into accelerated. I hope you find the right drug or have a successful bmt. I'm sorry if something I said caused you to feel badly, but you must know that we all feel like we hope we never have to resort to transplant. When you say you lost your Gleevec response, that scares me. We're all open to words we might not like to hear when we read the list. I'm not sorry that I feel I would only go to transplant as a last resort. I need to be realistic about it, I know too many people from the list in my few years here who were not successful with transplant. Of course, there are also many with wonderful successful bmt's.. That's what I wish for you and any of us who, unfortunately, have to take that route. in NY ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 -Dear All The posts on BMT have been a wealth of info as always. I too was recommended that this may be a route I would have to take by Cortes (MD )and to get my Brothers HLA in place. This info is all now at MD and waiting to be matched up. I wandered if he suggested this to me as I have 7 other mutations beside PH ones hence cloning evolution. Please let me know what you all think. I have already decided myself that I will just keep taking the wonderful Gleevec (have already reached PCR..dx May 07) until it is no longer working, then try another medication and only as a last resort a BMT (I am 48). BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have opted not to do and intend to get one on my DX anniversary instead. Thanks always for your wealth of information. Regards Donna x -- In , " Malseed " <rodorbal@...> wrote: > > Hi Tracey and Marcos, > > > > Once again I agree with your words of wisdom - it is definitely not > something that I would consider without a lot of evidence and better odds > and at 50 I don't think I am " fireproof " . Perhaps it is the Australian way > as he said to me about the possibility of a transplant also at my first > visit. As we have Prof over here, I would be wanting a consult with > him first! > > > > Thanks again. > > > > Regards, > > > > > > > > _____ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 Here's a link to the article http://tinyurl.com/2n7mzj You may need a registration, if you give me a email adress I send the pdf (I can't attach files in the group). Marcos. On Wed, Feb 20, 2008 at 1:18 PM, donnaberry99 <no_reply > wrote: > > > > > -Marcos, > Thanks for your input. I am still trying to find out if the > mutations I have are any of the known bad guys, when MD sent > my BMB results they said how many there were but didn't give any a > name for them. I have found that getting some of my results is a > real problem. I am still trying to determine which labs my 2 BMB > were sent to in order to calculate true log reductions (one was done > in Pensacola and the other at MD ). > Please send me that info. > Donna x-- In , " Marcos Perreau Guimaraes " > > <montereyunderwater@...> wrote: > > > > Hi Donna, > > It depends on what specific mutations, most are harmless but some > make > > the cml more aggressive and resistant to the drugs. For some like > the > > T315i the top drs still recommend looking for a BMT as the remission > > tend to be limited in time. Same thing if the cml has progressed to > > blast phase. I think you shouldn't discard too much your dr advice. > > You can get a 2nd opinion with Dr Druker, or send him an email. > There > > is a recent paper in the blood journal discussing these options, I > can > > send it to you if you want. Checking HLA compatibility with siblings > > is not a bad idea anyway, if anything it takes out some pressure > from > > them. > > Marcos. > > > > On Wed, Feb 20, 2008 at 11:41 AM, donnaberry99 > <no_reply > wrote: > > > > > > > > > > > > > > > -Dear All > > > The posts on BMT have been a wealth of info as always. I too was > > > recommended that this may be a route I would have to take by > > > Cortes (MD )and to get my Brothers HLA in place. This info > > > is all now at MD and waiting to be matched up. I wandered > > > if he suggested this to me as I have 7 other mutations beside PH > ones > > > hence cloning evolution. Please let me know what you all think. I > > > have already decided myself that I will just keep taking the > > > wonderful Gleevec (have already reached PCR..dx May 07) until it > is > > > no longer working, then try another medication and only as a last > > > resort a BMT (I am 48). > > > BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have > > > opted not to do and intend to get one on my DX anniversary > instead. > > > Thanks always for your wealth of information. > > > Regards Donna x > > > > > > -- In , " Malseed " <rodorbal@> wrote: > > > > > > > > Hi Tracey and Marcos, > > > > > > > > > > > > > > > > Once again I agree with your words of wisdom - it is definitely > not > > > > something that I would consider without a lot of evidence and > > > better odds > > > > and at 50 I don't think I am " fireproof " . Perhaps it is the > > > Australian way > > > > as he said to me about the possibility of a transplant also at > my > > > first > > > > visit. As we have Prof over here, I would be wanting a > > > consult with > > > > him first! > > > > > > > > > > > > > > > > Thanks again. > > > > > > > > > > > > > > > > Regards, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 Hi Donna, It sounds like the kind of mutations you are talking about is not a mutation of the Gleevec binding site (ie T315I) but mutations of the chromosomes other than the Philadelphia chromosome (ie you might have 3 chromosome 8's instead of 2). Often patients get those 2 types of mutations confused with each other but they do have different meanings for treatment. The type you have might mean possible clonal evolution and is often associated with the advanced phases of cml. Drug treatments don't always work as well in advanced phases. You were wise to see a specialist like Dr. Cortes (he is a top cml doctor) and it sounds like he is on top of things by recommending you get your siblings tested so you will be ready if you need to get a transplant. If you are responding well to Gleevec and continue responding well you will probably never need that transplant, but it will be good to know whether or not you have a sibling matched donor because the extra mutations might make your disease a higher risk than a more plain vanilla type with just the Ph+ chromosome. If I were you I would continue being seen & tested at MDACC as they have a very sensitive PCR test and Dr. Cortes will know what you should do. You should probably get a BMB more often than a more typical case as that is the only way they can see if these extra mutations are disappearing or not with Gleevec treatment (the pcr won't show that). That extra testing won't be necessary forever but you are still less than a year from diagnosis and this is a critical time for them to see how you are going to respond. And please remember that there are patients who have had transplants who are doing very well--it shouldn't be done without good reason but there is still a place for this treatment. I'm glad to hear you seem to be responding well to Gleevec (but it's not clear from your post what your current remission state is). Best wishes to you. Dorothy dx 5/2000 On Feb 20, 2008, at 2:41 PM, donnaberry99 wrote: > -Dear All > The posts on BMT have been a wealth of info as always. I too was > recommended that this may be a route I would have to take by > Cortes (MD )and to get my Brothers HLA in place. This info > is all now at MD and waiting to be matched up. I wandered > if he suggested this to me as I have 7 other mutations beside PH ones > hence cloning evolution. Please let me know what you all think. I > have already decided myself that I will just keep taking the > wonderful Gleevec (have already reached PCR..dx May 07) until it is > no longer working, then try another medication and only as a last > resort a BMT (I am 48). > BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have > opted not to do and intend to get one on my DX anniversary instead. > Thanks always for your wealth of information. > Regards Donna x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 Marcos, I am having some issues to download the doc. would you please sen it to me? My address is edultrasound@... and if you let me know about other sites like this one I will really appreciate it. Thnaks a lot! Edgardo Marcos Perreau Guimaraes <montereyunderwater@...> wrote: Here's a link to the article http://tinyurl.com/2n7mzj You may need a registration, if you give me a email adress I send the pdf (I can't attach files in the group). Marcos. On Wed, Feb 20, 2008 at 1:18 PM, donnaberry99 <no_reply > wrote: > > > > > -Marcos, > Thanks for your input. I am still trying to find out if the > mutations I have are any of the known bad guys, when MD sent > my BMB results they said how many there were but didn't give any a > name for them. I have found that getting some of my results is a > real problem. I am still trying to determine which labs my 2 BMB > were sent to in order to calculate true log reductions (one was done > in Pensacola and the other at MD ). > Please send me that info. > Donna x-- In , " Marcos Perreau Guimaraes " > > <montereyunderwater@...> wrote: > > > > Hi Donna, > > It depends on what specific mutations, most are harmless but some > make > > the cml more aggressive and resistant to the drugs. For some like > the > > T315i the top drs still recommend looking for a BMT as the remission > > tend to be limited in time. Same thing if the cml has progressed to > > blast phase. I think you shouldn't discard too much your dr advice. > > You can get a 2nd opinion with Dr Druker, or send him an email. > There > > is a recent paper in the blood journal discussing these options, I > can > > send it to you if you want. Checking HLA compatibility with siblings > > is not a bad idea anyway, if anything it takes out some pressure > from > > them. > > Marcos. > > > > On Wed, Feb 20, 2008 at 11:41 AM, donnaberry99 > <no_reply > wrote: > > > > > > > > > > > > > > > -Dear All > > > The posts on BMT have been a wealth of info as always. I too was > > > recommended that this may be a route I would have to take by > > > Cortes (MD )and to get my Brothers HLA in place. This info > > > is all now at MD and waiting to be matched up. I wandered > > > if he suggested this to me as I have 7 other mutations beside PH > ones > > > hence cloning evolution. Please let me know what you all think. I > > > have already decided myself that I will just keep taking the > > > wonderful Gleevec (have already reached PCR..dx May 07) until it > is > > > no longer working, then try another medication and only as a last > > > resort a BMT (I am 48). > > > BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have > > > opted not to do and intend to get one on my DX anniversary > instead. > > > Thanks always for your wealth of information. > > > Regards Donna x > > > > > > -- In , " Malseed " <rodorbal@> wrote: > > > > > > > > Hi Tracey and Marcos, > > > > > > > > > > > > > > > > Once again I agree with your words of wisdom - it is definitely > not > > > > something that I would consider without a lot of evidence and > > > better odds > > > > and at 50 I don't think I am " fireproof " . Perhaps it is the > > > Australian way > > > > as he said to me about the possibility of a transplant also at > my > > > first > > > > visit. As we have Prof over here, I would be wanting a > > > consult with > > > > him first! > > > > > > > > > > > > > > > > Thanks again. > > > > > > > > > > > > > > > > Regards, > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2008 Report Share Posted February 21, 2008 Hi Donna, This is going to be tough, but it needs to be said. From your post, it appears that you don't agree with the way Dr. Cortes is treating your CML. My best recommendation is that you find another doctor to treat your CML that will go along with your wishes. It seems to me that if you have mutations, the best way to monitor them may be by BMBs. A BMB is a diagnostic tool, and refusing to have one might put you in jeopardy. e.g. suppose you are developing blast cells or clonal evolutions and you wait 6-9 months before having a BMB, it might even be too late to have a life saving BMT. Zavie Zavie (age 69) 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of donnaberry99 Sent: February 20, 2008 2:42 PM Subject: [ ] Re: BMT -Dear All The posts on BMT have been a wealth of info as always. I too was recommended that this may be a route I would have to take by Cortes (MD )and to get my Brothers HLA in place. This info is all now at MD and waiting to be matched up. I wandered if he suggested this to me as I have 7 other mutations beside PH ones hence cloning evolution. Please let me know what you all think. I have already decided myself that I will just keep taking the wonderful Gleevec (have already reached PCR..dx May 07) until it is no longer working, then try another medication and only as a last resort a BMT (I am 48). BTW Dr. Cortes also wanted me to get BMB every 3 mos, which I have opted not to do and intend to get one on my DX anniversary instead. Thanks always for your wealth of information. Regards Donna x -- In groups (DOT) <mailto:%40> com, " Malseed " <rodorbal@...> wrote: > > Hi Tracey and Marcos, > > > > Once again I agree with your words of wisdom - it is definitely not > something that I would consider without a lot of evidence and better odds > and at 50 I don't think I am " fireproof " . Perhaps it is the Australian way > as he said to me about the possibility of a transplant also at my first > visit. As we have Prof over here, I would be wanting a consult with > him first! > > > > Thanks again. > > > > Regards, > > > > > > > > _____ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2008 Report Share Posted February 21, 2008 Donna, I agree withTracey. Also I am a patient at MDA. While I haven't met dr cortes I am a patient of dr. Kantarjian. Cortes is the doc on my trial. I have found that kantarjian and his whole team are not ones to rush to a BMT. If they are suggesting that you investigate the option it is no doubt for very good reasons like mutations etc. I have a BMT doc too at MDA because I don't want to wait to investigate options under duress. I plan on a long life using the meds.....however.... I also want to have the information and planning in place if I ever do need a BMT. My doc's name is DeLima and he is great. He is calming, smart, and works well with others. He too doesn't want to rush into transplant unless its a needed option. Regarding BMBs. At MDA they do 100s of BMBs a week. I found it to be a pain but nothing like the horror stories I had heard. I don't think MDA docs would ask folks to endure BMBs unless it was clinically necessary. I am in a trial and ys there probably are mor tests if you are in a trial but that's part of what I signed up for in the trial. Please take a deep breath and really talk to your docs so that you can get the answers you need to feel comfortable with what they are suggesting. Call me if you want. I'm in houston and I'm happy to come hold your hand during the BMB. Please monitor your disease well so you can enjoy a long and happy life. Thanks for sharing your concerns with us. Rhonda 7135015989 Sent from my Verizon Wireless BlackBerry [ ] Re: BMT I've often said that I don't see the need for regular BMB's IF (and this is a HUGE IF), the patient has achieved a very good response (MMR) AND has no history of any other problems (such as clonal evolutions or mutations). If I had a history of " problems " , I wouldn't hesitate to do regular BMB's especially in the first 2-3 years of treatment when you're the most likely to encounter problems. In the old days of Interferon, most patients did have BMB's every 3 months and that was because so few did well on Interferon that their disease needed to be monitored very closely. The same protocol still exists today for patients who aren't doing " as well " as they " should " . I've also said that I see no need to have a BMT IF (again, this is a HUGE IF), the patient is responding well and has no " out of the norm " risk factors (such as the famous T315i mutation). If I had this particular mutation, I would very seriously consider a BMT. Donna, I think you should really find out exactly what your situation is before you make decisions such as declaring that you won't have regular BMB's or won't consider a BMT. It appears that you do not have " garden variety " CML which is all the more reason to be very informed especially if you're going to go against your doctor's suggestions. It's true that some of our members have gone against their doctor's suggestions but most of these patients were VERY well informed and had " run of the mill " doctors who were not considered experts and who suggested treatments that were clearly against the standard. I think an important question you should ask yourself is, are you confident that you know enough about your situation to make treatment decisions that go against your doctor's suggestions especially knowing that your particular doctor is considered one of the top in the field? Tracey Quote Link to comment Share on other sites More sharing options...
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