6 replies to this topic

[AdamJ]

I recently visited my oncologist for the regular 3 month PCR and checkup and was shot down again regarding dosage reduction. The response was simply that they don't do it. I am not sure if there is anyone else in the area that may have a recommendation, but hopefully somebody in the forum is in the area. I have currently been visiting Weill-Cornell (New York Presbyterian) and their response to my questions regarding dosage reduction has been a firm "no" just as I experienced with my oncologist in Japan. I am quite confident that my rapid response to Sprycel indicates that I will do well on a lower dose of 50mg or even possibly 20mg. I am more than willing to reduce slowly (starting with 70mg or 80mg) and have more frequent PCR tests, but I need to find a doctor that will support this approach.  If there is anyone in the NYC area that has found a doctor willing to try reduced dosages, please let me know either here or via PM.

 

Thanks in advance.

[scuba]

You are absolutely correct that you will likely do very well on reduced dosage. Your doctor insisting on 100mg Sprycel in your case given your PCRU achievement in less than a year, borders on malpractice. Full dose sprycel should only be prescribed for patients who do not respond on anything less. It's a trade-off against pleural effusion and other toxicities and getting CML under control. Your CML is more than under control. Your doctor should absolutely cut dose so that you can maintain PCRU without added toxicity.

 

Perhaps you can ask your doctor to consult with Dr. Jorge Cortes at M.D. Anderson and learn about his research results regarding lower dose Sprycel effectiveness. At the very least your dose should be half what you are taking now. Given your response curve, I suspect you will easily maintain PCRU on 20mg Sprycel. There is no risk to you in trying. Worse case, you have to increase your dose. But starting low and working up is much preferred over staying at 100mg.

 

(https://www.mskcc.or...rs/ellin-berman)

[Jan0080]

Ellin Berman at Sloan Kettering or anyone in that department.

[AdamJ]

Thank you Scuba and Jan for the responses. I am going to call Sloan Kettering now and give it a shot.  If that does not work I will mention Dr. Cortes as a reference to see if they will consider a dosage reduction at either hospital. I would personally love to start low and work my way up, but I suspect that I will have to compromise and work in the other direction over time. (Maybe 80 -> 70 -> 50 -> 40 -> 20 or something along those lines). Personally I will be happy with any type of reduction with the goal being a minimal dose over the long term. I don't see the point in putting unnecessary poison in my system just because on average that amount was the most effective for the largest number of people.  

[SandyG353]

Dr. Michael Mauro is a CML Expert and is in Sloan Kettering in New York City.

[lanadal]

I second Michael Mauro. He is a CML expert who worked with Dr. Druker in Portland Oregon. He is caring, personable, very knowledgeable, and "cutting edge" up-to-date!

[Lynne D]

I'm late to this post, but if you are in NYC,  MICHAEL MAURO is the absolute best. He has been my friend and Dr. for over 4 years since he moved back east. He was at OHSU in Portland with Dr. Druker, where I flew out once a year for 3 years previous to him moving back. He is brilliant, compassionate, has the best bedside manner and will explain everything to you so you will understand it. First visits are usually a good 2 hours long with him. An incredible human being and Dr. THE best. Do post how you make out.