Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 Hi Efrem, Welcome to the club that nobody really wants to be a member of. I missed your initial post to the list and didn't get a chance to welcome you here. If yours is a run of the mill CML (like most are), and you are doing well on a 400 mg dose, there is no reason to seek a second opinion. I have been on 400 mg since March 2001 without any problems or nasty side effects. At your 3 month check up you will know if the Gleevec is working well. That will be the time to look for a second opinion if things are not going well. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Second Opinions ? I was diagnosed with CML a little over a month ago. So far the treatment is going well. My counts are good and I have been on Gleevec 400 MG for about 2 weeks and am responding well with minimal side effects. My question is when do you go for second opinions ? I am extremely happy with my doctor. However, people always suggest going to a big cancer place like Sloan Kettering or Columbia Presbetyrian for a second opinion. Any thoughts ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 We sort of wondered the same thing. My husband is doing very well on gleevec with the side effects subsiding. We feel it not needed to get a second opinion at this point with him doing so well. We have spoken with 2 other physicians who are very experienced with CML and both agree our course of action is exactly what they would recommend. So for now- as long as he has no problems..we are seeking no other opinion. -shalyn > I was diagnosed with CML a little over a month ago. So far the > treatment is going well. > > My counts are good and I have been on Gleevec 400 MG for about 2 weeks > and am responding well with minimal side effects. > > My question is when do you go for second opinions ? I am extremely > happy with my doctor. However, people always suggest going to a big > cancer place like Sloan Kettering or Columbia Presbetyrian for a > second opinion. > > Any thoughts ? > > " Catch on fire with enthusiasm and people will come for miles to watch you burn. " - Wesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 Thank you for your advice. I am new to all of this as no one in my family has ever had any form of cancer. You make a very good point. And, I will reevaluate after the 3-month checkup. My WBC is down to 2,500 (it was 190,000 when I was diagnosed a little over a month ago), as I have just recently come off the hydrea and the doctor said it is still in my system. My Hemoglobin levels are still low. I am at 9.9 and am taking procrit which is helping (it was as low as 8). Zavie miller <zmiller@...> wrote: Hi Efrem, Welcome to the club that nobody really wants to be a member of. I missed your initial post to the list and didn't get a chance to welcome you here. If yours is a run of the mill CML (like most are), and you are doing well on a 400 mg dose, there is no reason to seek a second opinion. I have been on 400 mg since March 2001 without any problems or nasty side effects. At your 3 month check up you will know if the Gleevec is working well. That will be the time to look for a second opinion if things are not going well. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Second Opinions ? I was diagnosed with CML a little over a month ago. So far the treatment is going well. My counts are good and I have been on Gleevec 400 MG for about 2 weeks and am responding well with minimal side effects. My question is when do you go for second opinions ? I am extremely happy with my doctor. However, people always suggest going to a big cancer place like Sloan Kettering or Columbia Presbetyrian for a second opinion. Any thoughts ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Dear Efrem, Are you in the NYC area? You mention Columbia Presbyterian and Sloan Kettering. I'm in Huntington, Long Island. I see a doctor in Mineola affiliated with Winthrop-University Hospital. I have never sought a second opinion from a CML specialist. Warm regards. > Hi Efrem, > > Welcome to the club that nobody really wants to be a member of. I missed > your initial post to the list and didn't get a chance to welcome you > here. > > If yours is a run of the mill CML (like most are), and you are doing well on > a 400 mg dose, there is no reason to seek a second opinion. > > I have been on 400 mg since March 2001 without any problems or nasty side > effects. > > At your 3 month check up you will know if the Gleevec is working well. That > will be the time to look for a second opinion if things are not going well. > > Zavie > > Zavie (age 68) > 67 Shoreham Avenue > Ottawa, Canada, 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 > PCRU 5/02 at RVH > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > [ ] Second Opinions ? > > I was diagnosed with CML a little over a month ago. So far the > treatment is going well. > > My counts are good and I have been on Gleevec 400 MG for about 2 weeks > and am responding well with minimal side effects. > > My question is when do you go for second opinions ? I am extremely > happy with my doctor. However, people always suggest going to a big > cancer place like Sloan Kettering or Columbia Presbetyrian for a > second opinion. > > Any thoughts ? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 Efram: I started out on 600 mg and was asked by my oncologist to get a second opinion at MD , from a CML specialist. I did not have any clonal mutations and was achieving good results with Gleevec, although I was, and am, having difficulty with side effects. My doctor did not really want me to go for a second opinion as such, but to see if there were any additional treatments and to get up to date information on treatments. Once the baseline studies were completed, I have gone back to MD every year (although they would prefer every six months) and at my next visit, we are contemplating a switch to Sprycel. MD regularly confers with my oncologist about results and treatments, as well as side effects. They also send additional information regarding " cutting edge " information. By my going to MD , he feels that he is able to stay up to date on CML treatments and he feels I get the support that I need for treatment. Having said this, if he and I disagree with a treatment plan that MD suggests, he is not scared to deviate from it if he feels it is best for me. MD is big and impersonal and I certainly feel like a number, not a patient, when I go there. I get very limited time with the doctor (maybe 10 minutes or so), but the PA and other staff are wonderful and take as much time as they need. That is my experience. With warm regards, Matt ville, FL DX January of 2005 Gleevec Since May 2005 Father of 3 mtmaynor@... In a message dated 2/8/2007 3:10:07 P.M. Eastern Standard Time, efrem_fischer@... writes: I was diagnosed with CML a little over a month ago. So far the treatment is going well. My counts are good and I have been on Gleevec 400 MG for about 2 weeks and am responding well with minimal side effects. My question is when do you go for second opinions ? I am extremely happy with my doctor. However, people always suggest going to a big cancer place like Sloan Kettering or Columbia Presbetyrian for a second opinion. Any thoughts ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2007 Report Share Posted February 9, 2007 I live in Teaneck, New Jersey which is in Bergen County eh12 <deh12@...> wrote: Dear Efrem, Are you in the NYC area? You mention Columbia Presbyterian and Sloan Kettering. I'm in Huntington, Long Island. I see a doctor in Mineola affiliated with Winthrop-University Hospital. I have never sought a second opinion from a CML specialist. Warm regards. > Hi Efrem, > > Welcome to the club that nobody really wants to be a member of. I missed > your initial post to the list and didn't get a chance to welcome you > here. > > If yours is a run of the mill CML (like most are), and you are doing well on > a 400 mg dose, there is no reason to seek a second opinion. > > I have been on 400 mg since March 2001 without any problems or nasty side > effects. > > At your 3 month check up you will know if the Gleevec is working well. That > will be the time to look for a second opinion if things are not going well. > > Zavie > > Zavie (age 68) > 67 Shoreham Avenue > Ottawa, Canada, 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 > PCRU 5/02 at RVH > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > [ ] Second Opinions ? > > I was diagnosed with CML a little over a month ago. So far the > treatment is going well. > > My counts are good and I have been on Gleevec 400 MG for about 2 weeks > and am responding well with minimal side effects. > > My question is when do you go for second opinions ? I am extremely > happy with my doctor. However, people always suggest going to a big > cancer place like Sloan Kettering or Columbia Presbetyrian for a > second opinion. > > Any thoughts ? > > Quote Link to comment Share on other sites More sharing options...
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