Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 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 saw new oncologist/hematologist... he seems very up.. He did his fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 years I had left on this earth with everything that was currently available. He then went on to say that BMT is the best option for someone my age and it was best done in the next year or two too increase odds of surviving CML free. I have 4 eligible siblings and 2 children (too young to be tested I think.) So, he's telling me I need BMT after I figure how to get some type of ins coverage. He would like to see that happen in the next year if possible. Sigh. I generally agree but little overwhelmed. Who else is my age and what have you been told. I have a lot of problems tolerating Sprycel. I was very SOB yesterday. Got Chest xray and wait to see if there's some fluid. Anyway, looking for your advice.. on how to get through this and where the heck to begin etc. I've read some stuff about BMT, so I have some knowledge etc, I think the logistics is going to kill me. I live in REno. They reccommend going to Seattle or LA (City of Hope). I've been to Stanford... They said that would be OK too. Family in VEgas. Friend in Seattle with twin babies. A friend has mom who lives near STanford. I have two kids, 7 and 2 years (girls). My husband is a sub teacher and on verge of getting contract and possibly insurance but pre existing.... would be 15 to 18 months I think before anything was covered (3 month eligiblity period included and wouldn't start until very late August. Suggestions... Advice... What do you all think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2008 Report Share Posted March 2, 2008 Hi, I love the responses. My question to your doctor is on what data does he base his prediction on. Did he also explain the survival rates when it comes to a BMT? My advice to you is to get a consult with one of the CML biggies and get their opinion on what to do. 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 3.5 log reduction Feb/08 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 marri35 Sent: March 1, 2008 11:23 PM Subject: [ ] Re: BMT 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 He had no right telling you that. You are young, strong and you do not know what the future holds for us. I am 65 and have had CML for 4 years. Been through gleevec, and just off Sprycel .now going to Tasigna. I am PCRU but the side effects are bad for me. But there are others that are doing very very very well. And if I get bad side effects on Tasigna I will go back to Sprycel. I did wonderfully for three years on it. And by then there will be something else. Do not give up. Sharon _____ From: [mailto: ] On Behalf Of Tracey Sent: Saturday, March 01, 2008 7:24 PM Subject: [ ] Re: BMT 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 guess I have the next year to figure this out. I have done terribly on Sprycel. I hope that I have responded too it cytogenically or whatever. This is cotor explained it: He said since I was 35 that gave me potentially 30 to 40 years in front of me. He said it was likely CML would get me in the end before I reached that 30 to 40 years even with medications available now. I think he is telling me that BMT is still the best way to cure and I am young enough to tolerate it. I'm confused at best but I know I wouldn't mind the prospect of not being on Sprycel or other medication if that were possible. He also alluded to toxicity after time with the meds. So, where's Dr. Druker at... does someone have an email for him. I certainly would love to have a second opinion. I don't know what to do. I don't know why I feel incredibly crappy on medicine. I feel better when I miss a day but I'm trying to keep on track. I tell myself it will settle down. Thanks everyone for your input. > > 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 Hi Marrianne, Dr. Druker's coordinates: Dr. Druker Oregon Health Sciences University Division of Hematology & Medical Oncology, L592 3181 Southwest Sam Park Road Portland, Oregon, 97201-3098 USA 503-494-5596 503-494-3688 FAX drukerb@... There are several other medications that work where Gleevec and Sprycel don't. Dr. Druker will be the best person to explain your options. 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 3.5 log reduction Feb/08 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 marri35 Sent: March 2, 2008 12:22 PM Subject: [ ] Re: BMT I guess I have the next year to figure this out. I have done terribly on Sprycel. I hope that I have responded too it cytogenically or whatever. This is cotor explained it: He said since I was 35 that gave me potentially 30 to 40 years in front of me. He said it was likely CML would get me in the end before I reached that 30 to 40 years even with medications available now. I think he is telling me that BMT is still the best way to cure and I am young enough to tolerate it. I'm confused at best but I know I wouldn't mind the prospect of not being on Sprycel or other medication if that were possible. He also alluded to toxicity after time with the meds. So, where's Dr. Druker at... does someone have an email for him. I certainly would love to have a second opinion. I don't know what to do. I don't know why I feel incredibly crappy on medicine. I feel better when I miss a day but I'm trying to keep on track. I tell myself it will settle down. Thanks everyone for your input. > > 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 The main thing to keep in mind is if you are responding to Sprycel you have time to decide. I was diagnosed at 38 (41 now) and had somewhat a comparable experience with my hematologist at Kaiser. Although he wasn't as pushy as you describe your dr he did lean at first towards a BMT, I was in very good physical shape, but I strongly resisted, and a 2nd opinion from a cml specialist in Paris confirmed that a BMT was not anymore a sensible first option, even at 38. Now they even hesitate proposing tthat to kids with cml. The drug (gleevec for me) was a little rough for the first month but it got a lot better and now I am in pretty good shape, working, climbing, diving. The most important thing is the test results (cytogenetics, FISH and PCR), if you have a good response the 1st year (reach complete cytogenetic remission, or better, major molecular remission) you will be pretty much out of the wood. If you don't get used to Sprycel you have other options such as Tasigna. If you have problems with the cost of the drugs others, on the list have experience getting them at low cost or free from the labs. I have good benefits from my job at Stanford so I never ran into the problem. If you go to Stanford and want to chat with a fellow cmler over coffee I d be happy to, I work across the street from the hospital. Marcos. On Sun, Mar 2, 2008 at 9:21 AM, marri35 <tmtip@...> wrote: > > > > > I guess I have the next year to figure this out. I have done terribly > on Sprycel. I hope that I have responded too it cytogenically or > whatever. This is cotor explained it: He said since I was 35 that > gave me potentially 30 to 40 years in front of me. He said it was > likely CML would get me in the end before I reached that 30 to 40 > years even with medications available now. I think he is telling me > that BMT is still the best way to cure and I am young enough to > tolerate it. I'm confused at best but I know I wouldn't mind the > prospect of not being on Sprycel or other medication if that were > possible. He also alluded to toxicity after time with the meds. So, > where's Dr. Druker at... does someone have an email for him. I > certainly would love to have a second opinion. I don't know what to > do. I don't know why I feel incredibly crappy on medicine. I feel > better when I miss a day but I'm trying to keep on track. I tell > myself it will settle down. Thanks everyone for your input. > > > > > 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/ > > > > > > -- 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 23, 2008 Report Share Posted March 23, 2008 Marri35: I know this is a late response, I am clearing old e-mail out today. I had CML, was dx in April 2005. Started on Gleevec and became resistant to it in 06. Did a short stint on Sprycel to hold me to transplant. It has been 13 months since transplant. I had a Mini Mud. I do not know my donor. Since having done the chemo and transplant I am in remission for CML. I have been since a couple of months after the transplant. It took almost a year for the new cells to come in and I have a new immune system. When I did the transplant I was 48 years old, young compared to the others in my transplant group. Because I do not have CML any longer I do not take the Gleevec or the Sprycel to maintain. My diseased cells are gone, I now have healthy cells. It took almost a year for me to get back to work. I won't say the transplant is easy. There is no easy path out of our situation. If you choose transplant there will be other issues. I have had minor gVHD, and a lung infection. But I am free of the CML. The issues are being worked out, CML would have killed me. First, get your insurance issues in order. Then you have to weigh out how you feel about your direction. You will need a caregiver for at least 4-5 months. You will be sick. But then your health will start coming back. Do not let scare tactics from people that have not gone through this procedure weigh in your decisions. Even if you don't want to go to transplant you may have to due to the drugs not working. Get you donor situation in order. I have spent the last year fighting for my life. I am glad to no longer be fighting the medication battle with CML. I have a chance to get my life back. Yeah, there are hurdles along the way. Don't tell me you live with CML and it is all smooth. I was told this month that if all goes well in the next few months I will be living with out restrictions and disease free for the first time in years. I am glad I took the chance with transplant. I might just get to see my youngest daughter graduate from college after all! Best of luck with you decisions. Oh also,. don't go to Stanford to do this procedure. Hutch in Seattle is one of the best facilities in the country to transplant. Mine was done in Atlanta so I could stay close to my daughters. It has gone ok, make your own decision based on your life and not fear. Best Regards, Therese Stone marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he seems very up.. He did his fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 years I had left on this earth with everything that was currently available. He then went on to say that BMT is the best option for someone my age and it was best done in the next year or two too increase odds of surviving CML free. I have 4 eligible siblings and 2 children (too young to be tested I think.) So, he's telling me I need BMT after I figure how to get some type of ins coverage. He would like to see that happen in the next year if possible. Sigh. I generally agree but little overwhelmed. Who else is my age and what have you been told. I have a lot of problems tolerating Sprycel. I was very SOB yesterday. Got Chest xray and wait to see if there's some fluid. Anyway, looking for your advice.. on how to get through this and where the heck to begin etc. I've read some stuff about BMT, so I have some knowledge etc, I think the logistics is going to kill me. I live in REno. They reccommend going to Seattle or LA (City of Hope). I've been to Stanford... They said that would be OK too. Family in VEgas. Friend in Seattle with twin babies. A friend has mom who lives near STanford. I have two kids, 7 and 2 years (girls). My husband is a sub teacher and on verge of getting contract and possibly insurance but pre existing.... would be 15 to 18 months I think before anything was covered (3 month eligiblity period included and wouldn't start until very late August. Suggestions... Advice... What do you all think? --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Marri35: One more thing, I don't see choosing a transplant as giving up on life. It actually give you one more option to choosing life. Transplant has been done for many, many years. Once you start looking into this option you will see how advanced this medical has become. Don't be archaic with the stats you look at, be up to date. Good Luck. Therese Stone marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he seems very up.. He did his fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 years I had left on this earth with everything that was currently available. He then went on to say that BMT is the best option for someone my age and it was best done in the next year or two too increase odds of surviving CML free. I have 4 eligible siblings and 2 children (too young to be tested I think.) So, he's telling me I need BMT after I figure how to get some type of ins coverage. He would like to see that happen in the next year if possible. Sigh. I generally agree but little overwhelmed. Who else is my age and what have you been told. I have a lot of problems tolerating Sprycel. I was very SOB yesterday. Got Chest xray and wait to see if there's some fluid. Anyway, looking for your advice.. on how to get through this and where the heck to begin etc. I've read some stuff about BMT, so I have some knowledge etc, I think the logistics is going to kill me. I live in REno. They reccommend going to Seattle or LA (City of Hope). I've been to Stanford... They said that would be OK too. Family in VEgas. Friend in Seattle with twin babies. A friend has mom who lives near STanford. I have two kids, 7 and 2 years (girls). My husband is a sub teacher and on verge of getting contract and possibly insurance but pre existing.... would be 15 to 18 months I think before anything was covered (3 month eligiblity period included and wouldn't start until very late August. Suggestions... Advice... What do you all think? --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hello Marri, I never post to anyone who is considering transplant, as it is not an option for me, at 78, so I have no knowledge of it. But if you have not had a second opinion on this, may I suggest that you get one? Dr. Druker in Portland Oregon and Dr. Talpaz in Ann Arbor, are to me the two finest doctors in the states. I have had cml for 13 years, and they only gave me 5 years in 1995, and I'm still around and kicking! And that is because of all the new drugs, and there are more in the near future. Good luck with your decision, I know it is not an easy one. Blessings, Bobby Therese Stone <kidme2003@...> wrote: Marri35: One more thing, I don't see choosing a transplant as giving up on life. It actually give you one more option to choosing life. Transplant has been done for many, many years. Once you start looking into this option you will see how advanced this medical has become. Don't be archaic with the stats you look at, be up to date. Good Luck. Therese Stone marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he seems very up.. He did his fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 years I had left on this earth with everything that was currently available. He then went on to say that BMT is the best option for someone my age and it was best done in the next year or two too increase odds of surviving CML free. I have 4 eligible siblings and 2 children (too young to be tested I think.) So, he's telling me I need BMT after I figure how to get some type of ins coverage. He would like to see that happen in the next year if possible. Sigh. I generally agree but little overwhelmed. Who else is my age and what have you been told. I have a lot of problems tolerating Sprycel. I was very SOB yesterday. Got Chest xray and wait to see if there's some fluid. Anyway, looking for your advice.. on how to get through this and where the heck to begin etc. I've read some stuff about BMT, so I have some knowledge etc, I think the logistics is going to kill me. I live in REno. They reccommend going to Seattle or LA (City of Hope). I've been to Stanford... They said that would be OK too. Family in VEgas. Friend in Seattle with twin babies. A friend has mom who lives near STanford. I have two kids, 7 and 2 years (girls). My husband is a sub teacher and on verge of getting contract and possibly insurance but pre existing.... would be 15 to 18 months I think before anything was covered (3 month eligiblity period included and wouldn't start until very late August. Suggestions... Advice... What do you all think? --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 I second Zavie. This is not about scare tactics or choosing sides in a football game. BMT is just not anymore the front line treatment of cml. No cml specialists advise it for chronic phase patients without trying the drugs first, neither LLS, NCF or European cancer organisations. Survival and remission rates for newly dx patients are a lot better with gleevec alone. If the drugs fail then BMT becomes one of the options. Anyway nobody should take this kind of decision without getting the opinion of one of the leader cml specialists. CML is a rare form of leukemia and most hematologists/oncologists don't see enough cml patients to be knowledgeable about current options. I am glad the BMT worked for you Theresa, and that you overcame the loss of remission with gleevec. And you are right that BMTs are getting better, but we don't even know if Marry is responding to the drug. And there is also no reason to rush a decision one way or another. Marcos. On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE <rcd1929@...> wrote: > > > > > Hello Marri, I never post to anyone who is considering transplant, as it is > not an option for me, at 78, so I have no knowledge of it. But if you have > not had a second opinion on this, may I suggest that you get one? Dr. Druker > in Portland Oregon and Dr. Talpaz in Ann Arbor, are to me the two finest > doctors in the states. I have had cml for 13 years, and they only gave me 5 > years in 1995, and I'm still around and kicking! And that is because of all > the new drugs, and there are more in the near future. Good luck with your > decision, I know it is not an easy one. Blessings, Bobby > > Therese Stone <kidme2003@...> wrote: Marri35: > > > > One more thing, I don't see choosing a transplant as giving up on life. It > actually give you one more option to choosing life. Transplant has been done > for many, many years. Once you start looking into this option you will see > how advanced this medical has become. Don't be archaic with the stats you > look at, be up to date. Good Luck. > > Therese Stone > > marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he > seems very up.. He did his > fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 > years I had left on this earth with everything that was currently > available. He then went on to say that BMT is the best option for > someone my age and it was best done in the next year or two too > increase odds of surviving CML free. I have 4 eligible siblings and 2 > children (too young to be tested I think.) So, he's telling me I need > BMT after I figure how to get some type of ins coverage. He would > like to see that happen in the next year if possible. Sigh. I > generally agree but little overwhelmed. Who else is my age and what > have you been told. I have a lot of problems tolerating Sprycel. I > was very SOB yesterday. Got Chest xray and wait to see if there's > some fluid. Anyway, looking for your advice.. on how to get through > this and where the heck to begin etc. I've read some stuff about BMT, > so I have some knowledge etc, I think the logistics is going to kill > me. I live in REno. They reccommend going to Seattle or LA (City of > Hope). I've been to Stanford... They said that would be OK too. > Family in VEgas. Friend in Seattle with twin babies. A friend has mom > who lives near STanford. I have two kids, 7 and 2 years (girls). My > husband is a sub teacher and on verge of getting contract and > possibly insurance but pre existing.... would be 15 to 18 months I > think before anything was covered (3 month eligiblity period included > and wouldn't start until very late August. Suggestions... Advice... > What do you all think? > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Ooops, I second a. The concatenation of adresses and signatures got me confused, sorry a Marcos. On Sun, Mar 23, 2008 at 12:06 PM, Marcos Perreau Guimaraes <montereyunderwater@...> wrote: > I second Zavie. This is not about scare tactics or choosing sides in a > football game. BMT is just not anymore the front line treatment of > cml. No cml specialists advise it for chronic phase patients without > trying the drugs first, neither LLS, NCF or European cancer > organisations. Survival and remission rates for newly dx patients are > a lot better with gleevec alone. If the drugs fail then BMT becomes > one of the options. Anyway nobody should take this kind of decision > without getting the opinion of one of the leader cml specialists. CML > is a rare form of leukemia and most hematologists/oncologists don't > see enough cml patients to be knowledgeable about current options. I > am glad the BMT worked for you Theresa, and that you overcame the loss > of remission with gleevec. And you are right that BMTs are getting > better, but we don't even know if Marry is responding to the drug. And > there is also no reason to rush a decision one way or another. > Marcos. > > > On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE <rcd1929@...> wrote: > > > > > > > > > > Hello Marri, I never post to anyone who is considering transplant, as it is > > not an option for me, at 78, so I have no knowledge of it. But if you have > > not had a second opinion on this, may I suggest that you get one? Dr. Druker > > in Portland Oregon and Dr. Talpaz in Ann Arbor, are to me the two finest > > doctors in the states. I have had cml for 13 years, and they only gave me 5 > > years in 1995, and I'm still around and kicking! And that is because of all > > the new drugs, and there are more in the near future. Good luck with your > > decision, I know it is not an easy one. Blessings, Bobby > > > > Therese Stone <kidme2003@...> wrote: Marri35: > > > > > > > > One more thing, I don't see choosing a transplant as giving up on life. It > > actually give you one more option to choosing life. Transplant has been done > > for many, many years. Once you start looking into this option you will see > > how advanced this medical has become. Don't be archaic with the stats you > > look at, be up to date. Good Luck. > > > > Therese Stone > > > > marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he > > seems very up.. He did his > > fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 > > years I had left on this earth with everything that was currently > > available. He then went on to say that BMT is the best option for > > someone my age and it was best done in the next year or two too > > increase odds of surviving CML free. I have 4 eligible siblings and 2 > > children (too young to be tested I think.) So, he's telling me I need > > BMT after I figure how to get some type of ins coverage. He would > > like to see that happen in the next year if possible. Sigh. I > > generally agree but little overwhelmed. Who else is my age and what > > have you been told. I have a lot of problems tolerating Sprycel. I > > was very SOB yesterday. Got Chest xray and wait to see if there's > > some fluid. Anyway, looking for your advice.. on how to get through > > this and where the heck to begin etc. I've read some stuff about BMT, > > so I have some knowledge etc, I think the logistics is going to kill > > me. I live in REno. They reccommend going to Seattle or LA (City of > > Hope). I've been to Stanford... They said that would be OK too. > > Family in VEgas. Friend in Seattle with twin babies. A friend has mom > > who lives near STanford. I have two kids, 7 and 2 years (girls). My > > husband is a sub teacher and on verge of getting contract and > > possibly insurance but pre existing.... would be 15 to 18 months I > > think before anything was covered (3 month eligiblity period included > > and wouldn't start until very late August. Suggestions... Advice... > > What do you all think? > > > > --------------------------------- > > Looking for last minute shopping deals? Find them fast with Search. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 hi guys my email hasn't worked in days just wondering if it is now aliza yaffa **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 yea From: taina2044@... Sent: Sunday, March 23, 2008 9:48 PM Subject: [ ] Re: BMT hi guys my email hasn't worked in days just wondering if it is now aliza yaffa **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Hey Marcos: It takes a tremendous amount of planning and dx to make any decision regarding your medical care. I do not consider what any one of us are going through " a game " . I am giving my opinion on my experiences with my treatment of CML. I payed my dues to all of this and have experience to share with those that might be backed into the corner I was in. As far as treatment for the CML my options were getting very limited. I decided not to wait to blast crisis before the latest and greatest trial came along. I needed to take action. My CML was past wait and see stage. The doctors I see all agreed it was time to consider a transplant. After 14 months of transplant recovery, I think it was a good choice. Any treatment we choose should be planned out very carefully. If you choose drugs or transplant you need a course of action. Financially, emotionally, mentally, insurance, if needed - donors, all need careful planning to survive the treatment. I am pissed you think I feel this is a game, let me tell you something, I fought hard to keep my life. We are warriors fighting a battle. Hope we all come out on the winning end. Therese Marcos Perreau Guimaraes <montereyunderwater@...> wrote: I second Zavie. This is not about scare tactics or choosing sides in a football game. BMT is just not anymore the front line treatment of cml. No cml specialists advise it for chronic phase patients without trying the drugs first, neither LLS, NCF or European cancer organisations. Survival and remission rates for newly dx patients are a lot better with gleevec alone. If the drugs fail then BMT becomes one of the options. Anyway nobody should take this kind of decision without getting the opinion of one of the leader cml specialists. CML is a rare form of leukemia and most hematologists/oncologists don't see enough cml patients to be knowledgeable about current options. I am glad the BMT worked for you Theresa, and that you overcame the loss of remission with gleevec. And you are right that BMTs are getting better, but we don't even know if Marry is responding to the drug. And there is also no reason to rush a decision one way or another. Marcos. On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE <rcd1929@...> wrote: > > > > > Hello Marri, I never post to anyone who is considering transplant, as it is > not an option for me, at 78, so I have no knowledge of it. But if you have > not had a second opinion on this, may I suggest that you get one? Dr. Druker > in Portland Oregon and Dr. Talpaz in Ann Arbor, are to me the two finest > doctors in the states. I have had cml for 13 years, and they only gave me 5 > years in 1995, and I'm still around and kicking! And that is because of all > the new drugs, and there are more in the near future. Good luck with your > decision, I know it is not an easy one. Blessings, Bobby > > Therese Stone <kidme2003@...> wrote: Marri35: > > > > One more thing, I don't see choosing a transplant as giving up on life. It > actually give you one more option to choosing life. Transplant has been done > for many, many years. Once you start looking into this option you will see > how advanced this medical has become. Don't be archaic with the stats you > look at, be up to date. Good Luck. > > Therese Stone > > marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... he > seems very up.. He did his > fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 > years I had left on this earth with everything that was currently > available. He then went on to say that BMT is the best option for > someone my age and it was best done in the next year or two too > increase odds of surviving CML free. I have 4 eligible siblings and 2 > children (too young to be tested I think.) So, he's telling me I need > BMT after I figure how to get some type of ins coverage. He would > like to see that happen in the next year if possible. Sigh. I > generally agree but little overwhelmed. Who else is my age and what > have you been told. I have a lot of problems tolerating Sprycel. I > was very SOB yesterday. Got Chest xray and wait to see if there's > some fluid. Anyway, looking for your advice.. on how to get through > this and where the heck to begin etc. I've read some stuff about BMT, > so I have some knowledge etc, I think the logistics is going to kill > me. I live in REno. They reccommend going to Seattle or LA (City of > Hope). I've been to Stanford... They said that would be OK too. > Family in VEgas. Friend in Seattle with twin babies. A friend has mom > who lives near STanford. I have two kids, 7 and 2 years (girls). My > husband is a sub teacher and on verge of getting contract and > possibly insurance but pre existing.... would be 15 to 18 months I > think before anything was covered (3 month eligiblity period included > and wouldn't start until very late August. Suggestions... Advice... > What do you all think? > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Hi Therese, I wasn't thinking you chose a BMT without reasons, you mentioned gleevec stopped working and I can understand you had some tough decisions to make, and BMT was certainly a sensible option at that point, I am sincerely glad you did well with it and I can only imagine you had some really rough time and lot of courage to pull through. I never suggested you take it as a game, sorry if it sounded that way, it was just about taking sides, and we sometime tend to take sides even when it is not a game. Well, before being a cml warrior, I have been a soldier, I guess I did that too . My point was that the ones who talked about other options weren't just trying to scare marry just because we don't like BMT, I got HLA tested with my brother in case of. But just after dx it is not so easy to stay calm and read about cml, it was a scary time for all of us, and we wanted marry to take more time to think about options and not to rush into following the first advice from the first oncologist she saw. As I mentioned on another post, cml is a rare condition and most oncologists have little experience with cml patients. I hope I clarified my previous post and I apologize if you felt offended, and wish sincerely you are not pissed at me anymore Cheers, Marcos. On Mon, Mar 24, 2008 at 6:30 AM, Therese Stone <kidme2003@...> wrote: > > > > > Hey Marcos: > > It takes a tremendous amount of planning and dx to make any decision > regarding your medical care. I do not consider what any one of us are going > through " a game " . I am giving my opinion on my experiences with my treatment > of CML. > > I payed my dues to all of this and have experience to share with those that > might be backed into the corner I was in. As far as treatment for the CML my > options were getting very limited. I decided not to wait to blast crisis > before the latest and greatest trial came along. I needed to take action. My > CML was past wait and see stage. > > The doctors I see all agreed it was time to consider a transplant. After 14 > months of transplant recovery, I think it was a good choice. Any treatment > we choose should be planned out very carefully. If you choose drugs or > transplant you need a course of action. Financially, emotionally, mentally, > insurance, if needed - donors, all need careful planning to survive the > treatment. > > I am pissed you think I feel this is a game, let me tell you something, I > fought hard to keep my life. We are warriors fighting a battle. Hope we all > come out on the winning end. > > Therese > > Marcos Perreau Guimaraes <montereyunderwater@...> wrote: I second > Zavie. This is not about scare tactics or choosing sides in a > > > football game. BMT is just not anymore the front line treatment of > cml. No cml specialists advise it for chronic phase patients without > trying the drugs first, neither LLS, NCF or European cancer > organisations. Survival and remission rates for newly dx patients are > a lot better with gleevec alone. If the drugs fail then BMT becomes > one of the options. Anyway nobody should take this kind of decision > without getting the opinion of one of the leader cml specialists. CML > is a rare form of leukemia and most hematologists/oncologists don't > see enough cml patients to be knowledgeable about current options. I > am glad the BMT worked for you Theresa, and that you overcame the loss > of remission with gleevec. And you are right that BMTs are getting > better, but we don't even know if Marry is responding to the drug. And > there is also no reason to rush a decision one way or another. > Marcos. > > On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE <rcd1929@...> > wrote: > > > > > > > > > > Hello Marri, I never post to anyone who is considering transplant, as it > is > > not an option for me, at 78, so I have no knowledge of it. But if you have > > not had a second opinion on this, may I suggest that you get one? Dr. > Druker > > in Portland Oregon and Dr. Talpaz in Ann Arbor, are to me the two finest > > doctors in the states. I have had cml for 13 years, and they only gave me > 5 > > years in 1995, and I'm still around and kicking! And that is because of > all > > the new drugs, and there are more in the near future. Good luck with your > > decision, I know it is not an easy one. Blessings, Bobby > > > > Therese Stone <kidme2003@...> wrote: Marri35: > > > > > > > > One more thing, I don't see choosing a transplant as giving up on life. It > > actually give you one more option to choosing life. Transplant has been > done > > for many, many years. Once you start looking into this option you will see > > how advanced this medical has become. Don't be archaic with the stats you > > look at, be up to date. Good Luck. > > > > Therese Stone > > > > marri35 <tmtip@...> wrote: I saw new oncologist/hematologist... > he > > seems very up.. He did his > > fellowship at Stanford etc. Anyway, I was quite suprised when 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. I'm 35 and he said I would not approach the 30 to 40 > > years I had left on this earth with everything that was currently > > available. He then went on to say that BMT is the best option for > > someone my age and it was best done in the next year or two too > > increase odds of surviving CML free. I have 4 eligible siblings and 2 > > children (too young to be tested I think.) So, he's telling me I need > > BMT after I figure how to get some type of ins coverage. He would > > like to see that happen in the next year if possible. Sigh. I > > generally agree but little overwhelmed. Who else is my age and what > > have you been told. I have a lot of problems tolerating Sprycel. I > > was very SOB yesterday. Got Chest xray and wait to see if there's > > some fluid. Anyway, looking for your advice.. on how to get through > > this and where the heck to begin etc. I've read some stuff about BMT, > > so I have some knowledge etc, I think the logistics is going to kill > > me. I live in REno. They reccommend going to Seattle or LA (City of > > Hope). I've been to Stanford... They said that would be OK too. > > Family in VEgas. Friend in Seattle with twin babies. A friend has mom > > who lives near STanford. I have two kids, 7 and 2 years (girls). My > > husband is a sub teacher and on verge of getting contract and > > possibly insurance but pre existing.... would be 15 to 18 months I > > think before anything was covered (3 month eligiblity period included > > and wouldn't start until very late August. Suggestions... Advice... > > What do you all think? > > > > --------------------------------- > > Looking for last minute shopping deals? Find them fast with Search. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 -- Hi Aliza, Your'e coming in nice and clear Esther - In , taina2044@... wrote: > > hi guys my email hasn't worked in days just wondering if it is now > aliza yaffa > > > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15? ncid=aolhom00030000000001) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2008 Report Share Posted March 25, 2008 Fellow Warriors- Thank goodness we are all so passionate about our friend,our disease. It is complacency that would kill us. The journey is a private one when it comes down to it- we each make our own decision- what is right for one may not be right for another. But life decisions should be made with as much information as possible. I love my Hem/Onc but I know he is learning with me. He is not afraid to consult or do research. He was not offended when I told him I asked Dr. Druker a question. The advice on the posts is priceless from those who have survived and are doing more than surviving many are even thriving.The technology of CML meds is evolving daily. I love that we can be so real with each other with all of are various pains cml quirks. We are family- we may not always agree brothers and sisters but we are bound by our blood . By the way if I may complain. I feel like crap. Pain in my left side and right shoulder- different from the usually cramps and bone pain.Night sweats again. I'm supposed to be in remission but this doesn't feel good. I switched from four 100 mg to one 400mg gleevec because I heard it was easier on the stomach. Now I'm wondering if I made a mistake. I'm feeling sort of paranoid- noticed a dark spot on my tongue today. I don't want to see cancer hiding in every nook and cranny of my body but... I know we are susceptible to secondary cancers and I have an almost 14 year old to raise. On a more positive note- I am having T- shirts printed as a fundraiser first for LLS and then for other cancer research with the logo- ME 2. It answers the question- Has Cancer impacted your life? well- Me too. I figure I should be able to sell a shirt to everyone in the world. The first shipment say- Warrior or Family or Friend. I'm donating Warrior shirts to children's hospitals- my goal is that every child diagnosed with cancer will leave the hospital with a warrior shirt. I will send a FREE Warrior shirt to anyone on this post if you send me your T shirt size and where tos end it.Eventually - I will make shirts/hats/sweatshirts that say- Cure, Survivor, Thriving- well you get the picture. 100% of the profits will go to Cancer Foundations. Love to you all. We are all on the same side- we are family. --- Marcos Perreau Guimaraes <montereyunderwater@...> wrote: > Hi Therese, > I wasn't thinking you chose a BMT without reasons, > you mentioned > gleevec stopped working and I can understand you had > some tough > decisions to make, and BMT was certainly a sensible > option at that > point, I am sincerely glad you did well with it and > I can only imagine > you had some really rough time and lot of courage to > pull through. I > never suggested you take it as a game, sorry if it > sounded that way, > it was just about taking sides, and we sometime tend > to take sides > even when it is not a game. Well, before being a cml > warrior, I have > been a soldier, I guess I did that too . My point > was that the ones > who talked about other options weren't just trying > to scare marry just > because we don't like BMT, I got HLA tested with my > brother in case > of. But just after dx it is not so easy to stay calm > and read about > cml, it was a scary time for all of us, and we > wanted marry to take > more time to think about options and not to rush > into following the > first advice from the first oncologist she saw. As I > mentioned on > another post, cml is a rare condition and most > oncologists have little > experience with cml patients. I hope I clarified my > previous post and > I apologize if you felt offended, and wish sincerely > you are not > pissed at me anymore > Cheers, > Marcos. > > On Mon, Mar 24, 2008 at 6:30 AM, Therese Stone > <kidme2003@...> wrote: > > > > > > > > > > Hey Marcos: > > > > It takes a tremendous amount of planning and dx to > make any decision > > regarding your medical care. I do not consider > what any one of us are going > > through " a game " . I am giving my opinion on my > experiences with my treatment > > of CML. > > > > I payed my dues to all of this and have experience > to share with those that > > might be backed into the corner I was in. As far > as treatment for the CML my > > options were getting very limited. I decided not > to wait to blast crisis > > before the latest and greatest trial came along. I > needed to take action. My > > CML was past wait and see stage. > > > > The doctors I see all agreed it was time to > consider a transplant. After 14 > > months of transplant recovery, I think it was a > good choice. Any treatment > > we choose should be planned out very carefully. If > you choose drugs or > > transplant you need a course of action. > Financially, emotionally, mentally, > > insurance, if needed - donors, all need careful > planning to survive the > > treatment. > > > > I am pissed you think I feel this is a game, let > me tell you something, I > > fought hard to keep my life. We are warriors > fighting a battle. Hope we all > > come out on the winning end. > > > > Therese > > > > Marcos Perreau Guimaraes > <montereyunderwater@...> wrote: I second > > Zavie. This is not about scare tactics or choosing > sides in a > > > > > > football game. BMT is just not anymore the front > line treatment of > > cml. No cml specialists advise it for chronic > phase patients without > > trying the drugs first, neither LLS, NCF or > European cancer > > organisations. Survival and remission rates for > newly dx patients are > > a lot better with gleevec alone. If the drugs fail > then BMT becomes > > one of the options. Anyway nobody should take this > kind of decision > > without getting the opinion of one of the leader > cml specialists. CML > > is a rare form of leukemia and most > hematologists/oncologists don't > > see enough cml patients to be knowledgeable about > current options. I > > am glad the BMT worked for you Theresa, and that > you overcame the loss > > of remission with gleevec. And you are right that > BMTs are getting > > better, but we don't even know if Marry is > responding to the drug. And > > there is also no reason to rush a decision one way > or another. > > Marcos. > > > > On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE > <rcd1929@...> > > wrote: > > > > > > > > > > > > > > > Hello Marri, I never post to anyone who is > considering transplant, as it > > is > > > not an option for me, at 78, so I have no > knowledge of it. But if you have > > > not had a second opinion on this, may I suggest > that you get one? Dr. > > Druker > > > in Portland Oregon and Dr. Talpaz in Ann Arbor, > are to me the two finest > > > doctors in the states. I have had cml for 13 > years, and they only gave me > > 5 > > > years in 1995, and I'm still around and kicking! > And that is because of > > all > > > the new drugs, and there are more in the near > future. Good luck with your > > > decision, I know it is not an easy one. > Blessings, Bobby > > > > > > Therese Stone <kidme2003@...> wrote: > Marri35: > > > > > > > > > > > > One more thing, I don't see choosing a > transplant as giving up on life. It > > > actually give you one more option to choosing > life. Transplant has been > > done > > > for many, many years. Once you start looking > into this option you will see > > > how advanced this medical has become. Don't be > archaic with the stats you > > > look at, be up to date. Good Luck. > > > > > > Therese Stone > > > > > > marri35 <tmtip@...> wrote: I saw new > oncologist/hematologist... > > he > > > seems very up.. He did his > > > fellowship at Stanford etc. Anyway, I was quite > suprised when 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. I'm 35 and he said I would not > approach the 30 to 40 > > > years I had left on this earth with everything > that was currently > > > available. He then went on to say that BMT is > the best option for > > > someone my age and it was best done in the next > year or two too > > > increase odds of surviving CML free. I have 4 > eligible siblings and 2 > > > children (too young to be tested I think.) So, > he's telling me I need > > > BMT after I figure how to get some type of ins > coverage. He would > > > like to see that happen in the next year if > possible. Sigh. I > > > generally agree but little overwhelmed. Who else > is my age and what > > > have you been told. I have a lot of problems > tolerating Sprycel. I > > > was very SOB yesterday. Got Chest xray and wait > to see if there's > > > some fluid. Anyway, looking for your advice.. on > how to get through > === message truncated === ________________________________________________________________________________\ ____ 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 25, 2008 Report Share Posted March 25, 2008 Hi China, I have also some left side/shoulder pain once in a while this last 3 years, even now I am PCRU. I mentioned it to the dr a few times and he wasn't too concerned, although he did check it up. Pretty much everything from toes to head on my left side got broken or cut at one point or another, and my left shoulder is not so good, what probably doesn't help. You certainly should tell it to your dr, but no reason to panic. Could be a lot of things, like gas (mild aerophagia), gall bladder duct getting irritated by the gleevec, etc. Good post by the way, and yes I want a t-shirt although I can contribute something, it doesn't have to be free. Size large for me. Thanks a lot, Take care, Marcos. On Mon, Mar 24, 2008 at 7:30 PM, china neal <chimera46@...> wrote: > > > > > Fellow Warriors- > > Thank goodness we are all so passionate about our > friend,our disease. It is complacency that would kill > us. The journey is a private one when it comes down to > it- we each make our own decision- what is right for > one may not be right for another. But life decisions > should be made with as much information as possible. > I love my Hem/Onc but I know he is learning with me. > He is not afraid to consult or do research. He was > not offended when I told him I asked Dr. Druker a > question. The advice on the posts is priceless from > those who have survived and are doing more than > surviving many are even thriving.The technology of CML > meds is evolving daily. I love that we can be so real > with each other with all of are various pains cml > quirks. > > We are family- we may not always agree brothers and > sisters but we are bound by our blood . By the way if > I may complain. I feel like crap. Pain in my left > side and right shoulder- different from the usually > cramps and bone pain.Night sweats again. I'm supposed > to be in remission but this doesn't feel good. I > switched from four 100 mg to one 400mg gleevec because > I heard it was easier on the stomach. Now I'm > wondering if I made a mistake. I'm feeling sort of > paranoid- noticed a dark spot on my tongue today. I > don't want to see cancer hiding in every nook and > cranny of my body but... I know we are susceptible to > secondary cancers and I have an almost 14 year old to > raise. > > On a more positive note- I am having T- shirts printed > as a fundraiser first for LLS and then for other > cancer research with the logo- ME 2. It answers the > question- Has Cancer impacted your life? well- Me too. > I figure I should be able to sell a shirt to everyone > in the world. The first shipment say- Warrior or > Family or Friend. I'm donating Warrior shirts to > children's hospitals- my goal is that every child > diagnosed with cancer will leave the hospital with a > warrior shirt. I will send a FREE Warrior shirt to > anyone on this post if you send me your T shirt size > and where tos end it.Eventually - I will make > shirts/hats/sweatshirts that say- Cure, Survivor, > Thriving- well you get the picture. 100% of the > profits will go to Cancer Foundations. > > Love to you all. We are all on the same side- we are > family. > > --- Marcos Perreau Guimaraes > > > <montereyunderwater@...> wrote: > > > Hi Therese, > > I wasn't thinking you chose a BMT without reasons, > > you mentioned > > gleevec stopped working and I can understand you had > > some tough > > decisions to make, and BMT was certainly a sensible > > option at that > > point, I am sincerely glad you did well with it and > > I can only imagine > > you had some really rough time and lot of courage to > > pull through. I > > never suggested you take it as a game, sorry if it > > sounded that way, > > it was just about taking sides, and we sometime tend > > to take sides > > even when it is not a game. Well, before being a cml > > warrior, I have > > been a soldier, I guess I did that too . My point > > was that the ones > > who talked about other options weren't just trying > > to scare marry just > > because we don't like BMT, I got HLA tested with my > > brother in case > > of. But just after dx it is not so easy to stay calm > > and read about > > cml, it was a scary time for all of us, and we > > wanted marry to take > > more time to think about options and not to rush > > into following the > > first advice from the first oncologist she saw. As I > > mentioned on > > another post, cml is a rare condition and most > > oncologists have little > > experience with cml patients. I hope I clarified my > > previous post and > > I apologize if you felt offended, and wish sincerely > > you are not > > pissed at me anymore > > Cheers, > > Marcos. > > > > On Mon, Mar 24, 2008 at 6:30 AM, Therese Stone > > <kidme2003@...> wrote: > > > > > > > > > > > > > > > Hey Marcos: > > > > > > It takes a tremendous amount of planning and dx to > > make any decision > > > regarding your medical care. I do not consider > > what any one of us are going > > > through " a game " . I am giving my opinion on my > > experiences with my treatment > > > of CML. > > > > > > I payed my dues to all of this and have experience > > to share with those that > > > might be backed into the corner I was in. As far > > as treatment for the CML my > > > options were getting very limited. I decided not > > to wait to blast crisis > > > before the latest and greatest trial came along. I > > needed to take action. My > > > CML was past wait and see stage. > > > > > > The doctors I see all agreed it was time to > > consider a transplant. After 14 > > > months of transplant recovery, I think it was a > > good choice. Any treatment > > > we choose should be planned out very carefully. If > > you choose drugs or > > > transplant you need a course of action. > > Financially, emotionally, mentally, > > > insurance, if needed - donors, all need careful > > planning to survive the > > > treatment. > > > > > > I am pissed you think I feel this is a game, let > > me tell you something, I > > > fought hard to keep my life. We are warriors > > fighting a battle. Hope we all > > > come out on the winning end. > > > > > > Therese > > > > > > Marcos Perreau Guimaraes > > <montereyunderwater@...> wrote: I second > > > Zavie. This is not about scare tactics or choosing > > sides in a > > > > > > > > > football game. BMT is just not anymore the front > > line treatment of > > > cml. No cml specialists advise it for chronic > > phase patients without > > > trying the drugs first, neither LLS, NCF or > > European cancer > > > organisations. Survival and remission rates for > > newly dx patients are > > > a lot better with gleevec alone. If the drugs fail > > then BMT becomes > > > one of the options. Anyway nobody should take this > > kind of decision > > > without getting the opinion of one of the leader > > cml specialists. CML > > > is a rare form of leukemia and most > > hematologists/oncologists don't > > > see enough cml patients to be knowledgeable about > > current options. I > > > am glad the BMT worked for you Theresa, and that > > you overcame the loss > > > of remission with gleevec. And you are right that > > BMTs are getting > > > better, but we don't even know if Marry is > > responding to the drug. And > > > there is also no reason to rush a decision one way > > or another. > > > Marcos. > > > > > > On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE > > <rcd1929@...> > > > wrote: > > > > > > > > > > > > > > > > > > > > Hello Marri, I never post to anyone who is > > considering transplant, as it > > > is > > > > not an option for me, at 78, so I have no > > knowledge of it. But if you have > > > > not had a second opinion on this, may I suggest > > that you get one? Dr. > > > Druker > > > > in Portland Oregon and Dr. Talpaz in Ann Arbor, > > are to me the two finest > > > > doctors in the states. I have had cml for 13 > > years, and they only gave me > > > 5 > > > > years in 1995, and I'm still around and kicking! > > And that is because of > > > all > > > > the new drugs, and there are more in the near > > future. Good luck with your > > > > decision, I know it is not an easy one. > > Blessings, Bobby > > > > > > > > Therese Stone <kidme2003@...> wrote: > > Marri35: > > > > > > > > > > > > > > > > One more thing, I don't see choosing a > > transplant as giving up on life. It > > > > actually give you one more option to choosing > > life. Transplant has been > > > done > > > > for many, many years. Once you start looking > > into this option you will see > > > > how advanced this medical has become. Don't be > > archaic with the stats you > > > > look at, be up to date. Good Luck. > > > > > > > > Therese Stone > > > > > > > > marri35 <tmtip@...> wrote: I saw new > > oncologist/hematologist... > > > he > > > > seems very up.. He did his > > > > fellowship at Stanford etc. Anyway, I was quite > > suprised when 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. I'm 35 and he said I would not > > approach the 30 to 40 > > > > years I had left on this earth with everything > > that was currently > > > > available. He then went on to say that BMT is > > the best option for > > > > someone my age and it was best done in the next > > year or two too > > > > increase odds of surviving CML free. I have 4 > > eligible siblings and 2 > > > > children (too young to be tested I think.) So, > > he's telling me I need > > > > BMT after I figure how to get some type of ins > > coverage. He would > > > > like to see that happen in the next year if > > possible. Sigh. I > > > > generally agree but little overwhelmed. Who else > > is my age and what > > > > have you been told. I have a lot of problems > > tolerating Sprycel. I > > > > was very SOB yesterday. Got Chest xray and wait > > to see if there's > > > > some fluid. Anyway, looking for your advice.. on > > how to get through > > > === message truncated === > > __________________________________________________________ > > Be a better friend, newshound, and > know-it-all with Mobile. Try it now. > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > -- 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 25, 2008 Report Share Posted March 25, 2008 Size large and even though I am in Canada , anything I can do to help including donation just say the work. Thanks Eva From: china neal Sent: Monday, March 24, 2008 10:30 PM Subject: Re: [ ] BMT Fellow Warriors- Thank goodness we are all so passionate about our friend,our disease. It is complacency that would kill us. The journey is a private one when it comes down to it- we each make our own decision- what is right for one may not be right for another. But life decisions should be made with as much information as possible. I love my Hem/Onc but I know he is learning with me. He is not afraid to consult or do research. He was not offended when I told him I asked Dr. Druker a question. The advice on the posts is priceless from those who have survived and are doing more than surviving many are even thriving.The technology of CML meds is evolving daily. I love that we can be so real with each other with all of are various pains cml quirks. We are family- we may not always agree brothers and sisters but we are bound by our blood . By the way if I may complain. I feel like crap. Pain in my left side and right shoulder- different from the usually cramps and bone pain.Night sweats again. I'm supposed to be in remission but this doesn't feel good. I switched from four 100 mg to one 400mg gleevec because I heard it was easier on the stomach. Now I'm wondering if I made a mistake. I'm feeling sort of paranoid- noticed a dark spot on my tongue today. I don't want to see cancer hiding in every nook and cranny of my body but... I know we are susceptible to secondary cancers and I have an almost 14 year old to raise. On a more positive note- I am having T- shirts printed as a fundraiser first for LLS and then for other cancer research with the logo- ME 2. It answers the question- Has Cancer impacted your life? well- Me too. I figure I should be able to sell a shirt to everyone in the world. The first shipment say- Warrior or Family or Friend. I'm donating Warrior shirts to children's hospitals- my goal is that every child diagnosed with cancer will leave the hospital with a warrior shirt. I will send a FREE Warrior shirt to anyone on this post if you send me your T shirt size and where tos end it.Eventually - I will make shirts/hats/sweatshirts that say- Cure, Survivor, Thriving- well you get the picture. 100% of the profits will go to Cancer Foundations. Love to you all. We are all on the same side- we are family. --- Marcos Perreau Guimaraes <montereyunderwater@...> wrote: > Hi Therese, > I wasn't thinking you chose a BMT without reasons, > you mentioned > gleevec stopped working and I can understand you had > some tough > decisions to make, and BMT was certainly a sensible > option at that > point, I am sincerely glad you did well with it and > I can only imagine > you had some really rough time and lot of courage to > pull through. I > never suggested you take it as a game, sorry if it > sounded that way, > it was just about taking sides, and we sometime tend > to take sides > even when it is not a game. Well, before being a cml > warrior, I have > been a soldier, I guess I did that too . My point > was that the ones > who talked about other options weren't just trying > to scare marry just > because we don't like BMT, I got HLA tested with my > brother in case > of. But just after dx it is not so easy to stay calm > and read about > cml, it was a scary time for all of us, and we > wanted marry to take > more time to think about options and not to rush > into following the > first advice from the first oncologist she saw. As I > mentioned on > another post, cml is a rare condition and most > oncologists have little > experience with cml patients. I hope I clarified my > previous post and > I apologize if you felt offended, and wish sincerely > you are not > pissed at me anymore > Cheers, > Marcos. > > On Mon, Mar 24, 2008 at 6:30 AM, Therese Stone > <kidme2003@...> wrote: > > > > > > > > > > Hey Marcos: > > > > It takes a tremendous amount of planning and dx to > make any decision > > regarding your medical care. I do not consider > what any one of us are going > > through " a game " . I am giving my opinion on my > experiences with my treatment > > of CML. > > > > I payed my dues to all of this and have experience > to share with those that > > might be backed into the corner I was in. As far > as treatment for the CML my > > options were getting very limited. I decided not > to wait to blast crisis > > before the latest and greatest trial came along. I > needed to take action. My > > CML was past wait and see stage. > > > > The doctors I see all agreed it was time to > consider a transplant. After 14 > > months of transplant recovery, I think it was a > good choice. Any treatment > > we choose should be planned out very carefully. If > you choose drugs or > > transplant you need a course of action. > Financially, emotionally, mentally, > > insurance, if needed - donors, all need careful > planning to survive the > > treatment. > > > > I am pissed you think I feel this is a game, let > me tell you something, I > > fought hard to keep my life. We are warriors > fighting a battle. Hope we all > > come out on the winning end. > > > > Therese > > > > Marcos Perreau Guimaraes > <montereyunderwater@...> wrote: I second > > Zavie. This is not about scare tactics or choosing > sides in a > > > > > > football game. BMT is just not anymore the front > line treatment of > > cml. No cml specialists advise it for chronic > phase patients without > > trying the drugs first, neither LLS, NCF or > European cancer > > organisations. Survival and remission rates for > newly dx patients are > > a lot better with gleevec alone. If the drugs fail > then BMT becomes > > one of the options. Anyway nobody should take this > kind of decision > > without getting the opinion of one of the leader > cml specialists. CML > > is a rare form of leukemia and most > hematologists/oncologists don't > > see enough cml patients to be knowledgeable about > current options. I > > am glad the BMT worked for you Theresa, and that > you overcame the loss > > of remission with gleevec. And you are right that > BMTs are getting > > better, but we don't even know if Marry is > responding to the drug. And > > there is also no reason to rush a decision one way > or another. > > Marcos. > > > > On Sun, Mar 23, 2008 at 9:45 AM, ROBERTA DOYLE > <rcd1929@...> > > wrote: > > > > > > > > > > > > > > > Hello Marri, I never post to anyone who is > considering transplant, as it > > is > > > not an option for me, at 78, so I have no > knowledge of it. But if you have > > > not had a second opinion on this, may I suggest > that you get one? Dr. > > Druker > > > in Portland Oregon and Dr. Talpaz in Ann Arbor, > are to me the two finest > > > doctors in the states. I have had cml for 13 > years, and they only gave me > > 5 > > > years in 1995, and I'm still around and kicking! > And that is because of > > all > > > the new drugs, and there are more in the near > future. Good luck with your > > > decision, I know it is not an easy one. > Blessings, Bobby > > > > > > Therese Stone <kidme2003@...> wrote: > Marri35: > > > > > > > > > > > > One more thing, I don't see choosing a > transplant as giving up on life. It > > > actually give you one more option to choosing > life. Transplant has been > > done > > > for many, many years. Once you start looking > into this option you will see > > > how advanced this medical has become. Don't be > archaic with the stats you > > > look at, be up to date. Good Luck. > > > > > > Therese Stone > > > > > > marri35 <tmtip@...> wrote: I saw new > oncologist/hematologist... > > he > > > seems very up.. He did his > > > fellowship at Stanford etc. Anyway, I was quite > suprised when 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. I'm 35 and he said I would not > approach the 30 to 40 > > > years I had left on this earth with everything > that was currently > > > available. He then went on to say that BMT is > the best option for > > > someone my age and it was best done in the next > year or two too > > > increase odds of surviving CML free. I have 4 > eligible siblings and 2 > > > children (too young to be tested I think.) So, > he's telling me I need > > > BMT after I figure how to get some type of ins > coverage. He would > > > like to see that happen in the next year if > possible. Sigh. I > > > generally agree but little overwhelmed. Who else > is my age and what > > > have you been told. I have a lot of problems > tolerating Sprycel. I > > > was very SOB yesterday. Got Chest xray and wait > to see if there's > > > some fluid. Anyway, looking for your advice.. on > how to get through > === message truncated === __________________________________________________________ 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...
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