Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hi all, If anyone is considering a BMT, the following paper by Dr. Mauro and Dr. Maziarz is a must read. It gives you the OHSU thinking. http://hep.uchicago.edu/~seturner/transplantdecision.pdf I especially like the flow chart that guides you through 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 Lottie Duthu Sent: March 23, 2008 6:05 PM CML Subject: [ ] Best options Dear Marri, Before getting a BMT, I would look at all my options. <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Dear Lottie, Can you tell me more about the PK Level test? Where can I get some info about it? How would I be able to take the test? I think that it is something that I might need. I am a newbie and a candidate for the Over 70 group. I am learning a lot by reading posts to this site. Thanks! Jan --- Lottie Duthu <lotajam@...> wrote: > Dear Marri, > Before getting a BMT, I would look at all my > options. If you are waiting to get into your > husband's insurance plan, why not try to get into a > trial. There seems to be no rush for you at this > time. Your expenses would be getting to and from a > treatment center. LLS reimburses you up to $500 per > year for expenses incurred in getting to and from > the treatment facility. You can also inquire from > them what other programs are in place for > assistance. You can email Dr. Druker and/or his > nurse, Carolyn Blasdel and they will answer you. > > Keep a folder with all the advice you get from > everyone and in the end, you will have to make the > final decision, but it will be an informed one. Go > with the best under your present circumstances. > Unfortunately some doctors do push for a BMT; > however, today's drugs have far greater promise that > in the past and they are improving all of the time. > Reistance and intolerance will soon be a thing of > the past with the new testing guidlines. Perhaps > the side effects are the result of getting too much > of a good thing. Checking for PK levels would assure > you that you are getting the right dosage for your > body. > > You can start searching for different trials here: > http://www.cancer.gov/search/ResultsClinicalTrialsAdvanced.aspx?protocolsearchid\ =4345290 > There is a plethora of web sites where you can > access information. I always look at the bottom to > see if there is a date and if it is too old, the > information may be outdated. You can also call the > LLS office nearest you for information. If you need > to travel out of town for treatment, the National > Cancer Society will assist you in getting a > complimentary room or at least one with a good > medical discount. Your church may be associated > with a group who helps pay for rooms at a discounted > rate and you would only require that you pay a small > co-payment. The facility you contact should have a > social worker who would be able to assist you in the > programs available locally. There are Angel Flight > pilots will also fly you to your destination and the > wives of pilots pick you up at the airport and bring > you to your hotel. Please do not overlook any > options out there, even if you think they may not > exist. I go to MDACC, so I can only give you names > and places in Houston, but they are available > elsewhere. If anyone else has additional > information, please do pipe in. > Blessings, > Lottie > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ 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 24, 2008 Report Share Posted March 24, 2008 That's a pretty good and clear paper, but it was published in 2003, so keep in mind things have changed a bit. For the story, when I was dx in march 2005, the first oncologist I had at Kaiser, a breast cancer specialist, gave me a booklet on cml from the LLS published in ... 2002 It had inteferon as frontline treatment, and gleevec for patients who failed interferon. And no matter what, most patient would get to blast phase after a few years. It made for a very uplifting reading. It didn't make so much sense as the dr started me on gleevec without interferon, and then I saw the publication date and started looking for more current information, and things started looking a heck of a lot better. After a few more things I wasn't too happy about, like letting a young md in residency tell me the bad news (I kind of guessed it was bad when I found out that medecine 2 was was the oncology department), I got another dr, an hematologist this time. At least the young md tried to give the impression she cared, what I never really felt from the first dr. The new dr is ok, and I had no other big problems with Kaiser. Marcos. On Sun, Mar 23, 2008 at 4:18 PM, andejane <andejane@...> wrote: > > > > > Dear Lottie, > > Can you tell me more about the PK Level test? Where > can I get some info about it? How would I be able to > take the test? I think that it is something that I > might need. > > I am a newbie and a candidate for the Over 70 group. > I am learning a lot by reading posts to this site. > > Thanks! > > Jan > > > > --- Lottie Duthu <lotajam@...> wrote: > > > Dear Marri, > > Before getting a BMT, I would look at all my > > options. If you are waiting to get into your > > husband's insurance plan, why not try to get into a > > trial. There seems to be no rush for you at this > > time. Your expenses would be getting to and from a > > treatment center. LLS reimburses you up to $500 per > > year for expenses incurred in getting to and from > > the treatment facility. You can also inquire from > > them what other programs are in place for > > assistance. You can email Dr. Druker and/or his > > nurse, Carolyn Blasdel and they will answer you. > > > > Keep a folder with all the advice you get from > > everyone and in the end, you will have to make the > > final decision, but it will be an informed one. Go > > with the best under your present circumstances. > > Unfortunately some doctors do push for a BMT; > > however, today's drugs have far greater promise that > > in the past and they are improving all of the time. > > Reistance and intolerance will soon be a thing of > > the past with the new testing guidlines. Perhaps > > the side effects are the result of getting too much > > of a good thing. Checking for PK levels would assure > > you that you are getting the right dosage for your > > body. > > > > You can start searching for different trials here: > > > http://www.cancer.gov/search/ResultsClinicalTrialsAdvanced.aspx?protocolsearchid\ =4345290 > > There is a plethora of web sites where you can > > access information. I always look at the bottom to > > see if there is a date and if it is too old, the > > information may be outdated. You can also call the > > LLS office nearest you for information. If you need > > to travel out of town for treatment, the National > > Cancer Society will assist you in getting a > > complimentary room or at least one with a good > > medical discount. Your church may be associated > > with a group who helps pay for rooms at a discounted > > rate and you would only require that you pay a small > > co-payment. The facility you contact should have a > > social worker who would be able to assist you in the > > programs available locally. There are Angel Flight > > pilots will also fly you to your destination and the > > wives of pilots pick you up at the airport and bring > > you to your hotel. Please do not overlook any > > options out there, even if you think they may not > > exist. I go to MDACC, so I can only give you names > > and places in Houston, but they are available > > elsewhere. If anyone else has additional > > information, please do pipe in. > > Blessings, > > Lottie > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________________ > 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...
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