Guest guest Posted October 29, 2007 Report Share Posted October 29, 2007 Hi Laurie, First, a big O!!! YIPPEEE!!! Number 1118 in the Zero Club Zavie for Robb. About going to MD every three months.. Dr. Shpall is a transplant specialist and Dr. Borthakur works with Dr. Giles and Dr. Kantarjian (2 of the top CML experts in the country). Robb doesn't seem to have a difficult time with his CML so I don't think it is necessary to travel there every 3 months. His local doctor can do all the testing and send the results to MD . They can advise him if any change is required. In my personal case, I saw Dr. Druker and Dr. Mauro in Portland during the clinical trials. Once they were over, I was then under the care of by my local hematologist. If there was to be any change in my treatment, I would contact Druker or Mauro to make sure it was OK with them. It is not clear to me as to why his dose was increased from 400 mg to 800 mg. Was there a problem that you haven't mentioned? You should be able to get everything done by your local hemo/onc and he should consult with your doctors at MD . Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of law.williams717 Sent: October 29, 2007 4:53 PM Subject: [ ] MD My husband Robb was diagnosed with CML on Christmas Eve last year. He started out on 400 mg of Gleevec, but after his 2nd bone marrow biopsy (in April) came back our local oncologist, here in St. sburg, suggested we go out to MD and get the ball rolling with testing, etc., for the possibility of a bone marrow transplant. So, off to Houston we went. We saw Dr. Shpall and Dr. Borthakur. I am happy to report that both his brother and sister are perfect matches, should he ever need one. Since that time, they increased his Gleevec to 800mg and now he is in complete cytogenetic remission as of 10/19/07. My question to all of you is, do you think that we should still travel to MD every 3 months (there are a lot of costs associated with that) for blood testing and the bone marrow biopsy. (That is what Dr. Borthakur in Houston has suggested) or just stick with our local oncologist? I know they say different labs have different guidelines, etc. I am glad we went to Houston, and thrilled that should Robb ever need a transplant, we have options. The insutance company has even approved the whole thing. I am just not sure we need to keep going out there with his current remission. Let me know your thoughts and thank you. Laurie wife of Robb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Thanks for the information. When Robb was diagnosed, he was in the accelerated phase with some blasts present. Robb was initially started on 400mg at the middle of January 2007 and then increased to 600mg in April when his counts were not coming down. After our first trip to MD , Dr. Borthakur advised that the optimum dose of Gleevec is 800mg and he wanted Robb to switch. He also said that the dose would stay at 800mg per day even after remission was achieved. _____ From: [mailto: ] On Behalf Of Zavie miller Sent: Monday, October 29, 2007 5:54 PM Cc: law.williams717 Subject: RE: [ ] MD Hi Laurie, First, a big O!!! YIPPEEE!!! Number 1118 in the Zero Club Zavie for Robb. About going to MD every three months.. Dr. Shpall is a transplant specialist and Dr. Borthakur works with Dr. Giles and Dr. Kantarjian (2 of the top CML experts in the country). Robb doesn't seem to have a difficult time with his CML so I don't think it is necessary to travel there every 3 months. His local doctor can do all the testing and send the results to MD . They can advise him if any change is required. In my personal case, I saw Dr. Druker and Dr. Mauro in Portland during the clinical trials. Once they were over, I was then under the care of by my local hematologist. If there was to be any change in my treatment, I would contact Druker or Mauro to make sure it was OK with them. It is not clear to me as to why his dose was increased from 400 mg to 800 mg. Was there a problem that you haven't mentioned? You should be able to get everything done by your local hemo/onc and he should consult with your doctors at MD . Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of law.williams717 Sent: October 29, 2007 4:53 PM groups (DOT) <mailto:%40> com Subject: [ ] MD My husband Robb was diagnosed with CML on Christmas Eve last year. He started out on 400 mg of Gleevec, but after his 2nd bone marrow biopsy (in April) came back our local oncologist, here in St. sburg, suggested we go out to MD and get the ball rolling with testing, etc., for the possibility of a bone marrow transplant. So, off to Houston we went. We saw Dr. Shpall and Dr. Borthakur. I am happy to report that both his brother and sister are perfect matches, should he ever need one. Since that time, they increased his Gleevec to 800mg and now he is in complete cytogenetic remission as of 10/19/07. My question to all of you is, do you think that we should still travel to MD every 3 months (there are a lot of costs associated with that) for blood testing and the bone marrow biopsy. (That is what Dr. Borthakur in Houston has suggested) or just stick with our local oncologist? I know they say different labs have different guidelines, etc. I am glad we went to Houston, and thrilled that should Robb ever need a transplant, we have options. The insutance company has even approved the whole thing. I am just not sure we need to keep going out there with his current remission. Let me know your thoughts and thank you. Laurie wife of Robb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2008 Report Share Posted December 2, 2008 Hi Patti, Prior to my transplant in 2004 I saw Dr Kantarjian and was quite satisfied. Blessings, Don > > Hi, > I have been reading the posts here since April '07 ( I was dx March '07 > but I don't post very often. I am so thankful to all of you for your > information and amazing support to those who do post with questions. > > Just a quick synopsis of my journey so far: > Dx - March 28, 2007 > Started Gleevec 400mg in April 07 > Great Hematological response within 3 weeks (WBC 150,000 to 9,000) > Stopped Gleevec end of May 07 due to intolerance (toxic response) > Started Sprycel 100mg in July 07 > Break from Spycel in August 07(SOB, edema, extreme fatigue) > Started Sprycel 50mg mid September 07 > Reached PCRU end of October 07 > Taken several drug vacations since due to fatigue and fluid retention > Have remained PCRU since > > As you can see I have been extremely lucky to have had such a great > response to Sprycel but I have been having a hard time with my QOL due > to the extreme fatigue I have been experiencing, along with the fluid > issues and weight gain! My onc is very supportive and listens to my > concerns and has conferred with other CML specialists regarding my > fatigue. I really want to continue taking Sprycel since it has done > such a great job and I have maintained a Complete Molecular response > but my onc is reluctant to reduce my Sprycel dose any lower to help > with the side effects since I am currently on a reduced dose of 50mg > already. > > My onc has suggested that I go to MD for a consult with one of > the CML experts there. I am his only CML patient currently taking > Sprycel and he thinks one of the specialists at MD might have > more experience and some insight into what other options I might try to > have a better QOL. Right now when I am taking the Sprycel there are > days it's all I can do to take a shower because I am so exhausted. And > because I don't have the energy to do anything (forget exercise) my > weight is exploding!! I've always had a weight problem but nothing > like this. And of course that leads to a whole other host of health > issues. > > Anyway, I have read that several of you go to MD for treatment > and may be familiar with some of the specialists there. I would really > welcome any advice or recommendations regarding anyone in particular > that might be able to help me. My onc mentioned three names, Dr. > O'Brien, Dr. Kantarjian, and Dr. Gomez. Any information would be > greatly appreciated. > > My onc did email Dr. Drucker, Dr. Talpaz, and Dr. O'Brien earlier when > I first was having issues to ask if they had any advice but at that > time they suggested checking other things (heart, thyroid, etc.) > because they didn't believe Sprycel caused extreme fatigue. I have had > all of those things checked and they are OK. Dr. Talpaz explained that > Tasigna probably wouldn't be a good alternative for me since it can > raise glucose levels and I have diabetes as well. > > Thank you for reading my post and any help you may share. > > Patti S. > Quote Link to comment Share on other sites More sharing options...
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