Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 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 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 -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 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...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 he told > me I had possibly 10 good years with the medications and that > eventuality would be tolerance to the medications by CML and eventual > progression. ........................ Suggestions... Advice... > What do you all think? *************************************** My suggestion is to have him tell you the lottery numbers for the next draw since he seems to have such a firm grasp on the future! Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 I agree with Tracey, I have never read anything in published results that would justify such prediction, at least in the general case. The life expectancy for cml patients that respond well to the drugs (gleevec and others) is not known as these drugs have been around only for about 9 years (gleevec was approved in 2001, 3 years before that on trials), and are so successful that it will take a lot more time to estimate a median survival. So far studies tend to show the opposite of your dr claim, that for patients achieving a good response (which is the majority) the rate of relapse decrease with time, to less than 1%/year. The most current study gives results only for a 6 years follow up, so I don't know where your dr got his information. You said in a previous post that you had lymphoma a few years back, I don't know if this affect your prognostic, but I doubt very much there's a lot of people in your case, so again I don't get where his information comes from. Seeing a dr that is recognized as a cml specialist is more important that the Stanford fellowship. Before considering something like a transplant it would be urgent to see somebody like Druker. If you can get used to sprycel (it may take a few months) there is Tasigna (which isn't associated with pleural effusion) and a long list of other drugs on trial. Marcos. On Sat, Mar 1, 2008 at 7:24 PM, Tracey <traceyincanada@...> wrote: > > > > > > he told > > me I had possibly 10 good years with the medications and that > > eventuality would be tolerance to the medications by CML and eventual > > progression. ........................ Suggestions... Advice... > > What do you all think? > > *************************************** > > My suggestion is to have him tell you the lottery numbers for the next > draw since he seems to have such a firm grasp on the future! > > Tracey > > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 THanks... that was helpful. > he told > > me I had possibly 10 good years with the medications and that > > eventuality would be tolerance to the medications by CML and eventual > > progression. ........................ Suggestions... Advice... > > What do you all think? > > > *************************************** > > My suggestion is to have him tell you the lottery numbers for the next > draw since he seems to have such a firm grasp on the future! > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 I'm really new to this whole CML thing -diagnosed March 2007 but- I agree it appears that overall CML with the new meds can become a chronic illness like diabetes with several factors that determine progression. Dr. Druker is amazingly reachable by email. He responds back pretty quickly. Why not shoot him an email. I agree - see a CML specialist before making any decision. You are young and you have young children - BMT is a cure but it has its own set of risks. Ask your doc how many CML patients he has treated. We are actually a pretty small group so unless he is doing CML research and/or conducting a clinical trial- he may not be treating very many CMLers. You know there are people who have had the disease for more than 10 years and that was before all of the new drugs. It is my understanding that City of Hope will do the BMT even if you don't have insurance so that is something to consider. I live in Orange County- if you do decide to come to LA or City of Hope for a second opinion- you are welcome to stay with me . I agree with Tracey- if your doc can give you a 10 year prognosis- he must be using a crystal ball because- now that they know how CML works there are new drugs in the pipeline- and no reason to think there won't be more. Seems to he was giving you the old thinking- but at that time they said -5 years. You are young enough that I think you'll see a cure in your lifetime. Having a doc who is realistic I think is good- he/she should talk about things that can go wrong, the mutations etc but for the pupose of informing not giving death sentences. If you read the posts you can see how individualized the diease is- some of us are on disability others are leading normal lives. But it seems weird that your doc can predict 10 years. Hang in there- Chi --- marri35 <tmtip@...> wrote: > THanks... that was helpful. > > > > he told > > > me I had possibly 10 good years with the > medications and that > > > eventuality would be tolerance to the > medications by CML and > eventual > > > progression. ........................ > Suggestions... Advice... > > > What do you all think? > > > > > > *************************************** > > > > My suggestion is to have him tell you the lottery > numbers for the > next > > draw since he seems to have such a firm grasp on > the future! > > > > Tracey > > > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Marrianne, I found your doctors statement to be utterly ridiculous which was reflected in my original response. As Marcos said, there is absolutely nothing published regarding the possibility that Gleevec or the other new drugs will eventually stop working. On the contrary, the relapse rates have come to a grinding halt in the 5th and 6th years of the IRIS trial. The top CML experts have said a number of times that they expect patients to live out normal life spans (20-30 years or more) if things continue in the direction they're currently going and who knows in that time if a true cure will be found. Survival rates for Gleevec at 6 years and BMT at 6 years aren't even in the same ball park (90% vs 60%) so if there were any arguments to choose one treatment over the other, I'd say that there is a much more compelling argument to choose drug therapy over BMT....which the experts have also said a number of times in various telephone conferences. A good number of transplant patients still end up taking Gleevec or Sprycel even after their transplants to help ward off relapse so you wouldn't necessarily be free of the CML drugs after transplant anyway. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Well, why do I keep wasting my money seeing doctors here. I'm going to Stanford or Seattle. I just have to figure out a way. THAnks, .(and everyone else who replied) I'm sorry about my response earlier. It's been very difficult and hard to make a decision about this stuff. > > Marrianne, > > I found your doctors statement to be utterly ridiculous which was > reflected in my original response. As Marcos said, there is > absolutely nothing published regarding the possibility that Gleevec > or the other new drugs will eventually stop working. On the > contrary, the relapse rates have come to a grinding halt in the 5th > and 6th years of the IRIS trial. > > The top CML experts have said a number of times that they expect > patients to live out normal life spans (20-30 years or more) if > things continue in the direction they're currently going and who > knows in that time if a true cure will be found. > > Survival rates for Gleevec at 6 years and BMT at 6 years aren't even > in the same ball park (90% vs 60%) so if there were any arguments to > choose one treatment over the other, I'd say that there is a much > more compelling argument to choose drug therapy over BMT....which the > experts have also said a number of times in various telephone > conferences. > > A good number of transplant patients still end up taking Gleevec or > Sprycel even after their transplants to help ward off relapse so you > wouldn't necessarily be free of the CML drugs after transplant anyway. > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 THanks. I'm glad to hear it. My husband would be relieved to hear it if someone agrees with that. > > I have to agree with all respondents! I wonder how up on current CML > options he really is? There are so many other than BMT options out there that I am > shocked he is so insistent. I am 42, diagnosed exactly one year ago today, > 01 March 2007. My Onc has maintained the BMT when all other options are > exhausted. He stated, and I personally agree that so long as the patient is > responding to meds, why risk the mortality rate of a BMT? I 100% agree, at least > for me. I also would urge you to see a CML guru - specialist like Dr > Druker, before going the BMT route. Perhaps your Onc sees something more than > stated and is not sharing. My extended family had been urging me to have them > type matched, to see if any are matches. I will soon, but have put it off a > little, as I seriously do not plan to go the BMT route, God willing. > > Cheers, > Chris > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel- campos-duffy/ > 2050827?NCID=aolcmp00300000002598) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 I would like to add my support to the others. Anjana, you are providing selfless service to people all over the world. I know I wouldn't be the caregiver I am without all your help and knowledge. There have been many times when this group was the only truly understanding support I had. I too belong to the " other " groups and I find them very condescending and negative. Please know that you are loved and appreciated by so many of us. Let's rise above any negativity and not allow it to effect us. Thanks for all you do. Coralee On Sun, 02 Mar 2008 17:29:31 -0000, " marri35 " <tmtip@...> wrote: > THanks. I'm glad to hear it. My husband would be relieved to hear it > if someone agrees with that. > >> >> I have to agree with all respondents! I wonder how up on current > CML >> options he really is? There are so many other than BMT options out > there that I am >> shocked he is so insistent. I am 42, diagnosed exactly one year > ago today, >> 01 March 2007. My Onc has maintained the BMT when all other > options are >> exhausted. He stated, and I personally agree that so long as the > patient is >> responding to meds, why risk the mortality rate of a BMT? I 100% > agree, at least >> for me. I also would urge you to see a CML guru - specialist like > Dr >> Druker, before going the BMT route. Perhaps your Onc sees > something more than >> stated and is not sharing. My extended family had been urging me > to have them >> type matched, to see if any are matches. I will soon, but have > put it off a >> little, as I seriously do not plan to go the BMT route, God > willing. >> >> Cheers, >> Chris >> >> >> >> **************Ideas to please picky eaters. Watch video on AOL > Living. >> (http://living.aol.com/video/how-to-please-your-picky-eater/rachel- > campos-duffy/ >> 2050827?NCID=aolcmp00300000002598) >> >> >> Quote Link to comment Share on other sites More sharing options...
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