5 replies to this topic

[Johnc]

I requested from BMS who makes Sprycel to provide me with data on the effectiveness of Sprycel at different doses as I am on 70 mg and probably will be on another drug break if my plts and anc don't hold up. My Specialist refuses to go on a lower dose. BMS said they would only provide data to the Specialist and I was not entitled to it. I told th BMS Rep it was me who was the paying customer and not the doctor and that is disengenuous. I told him if I go on another drug break I will be pt on Tasignia and they will lose my business. This is unbelievable that the customer can't get documented information from a drug company.

Does anyone on the Board know where this information can be found?

Johnc

[CallMeLucky]

I don't think that information is public, but if you query "low dosage dasatinib" you can find studies that discuss low dosage dasatinib and that in general it is effective.  The problem is that they don't provide great detail in the information that is public.  For instance you will see something that might say the median dosage was 80mg.  What does that mean?  You could have 100 people on low dose, 98 of them on 20 mg, one on 80mg and one on 90mg and your median is 80mg.  Unless you know additional statistics about the population you can't determine anything meaningful.

Not surprised about them not giving you the information.  I got one better for you, try calling a lab to get your test results - you are the patient, it is your blood, you are paying for the test, yet you are not entitled to the results, only your doctor can get them and then up to him/her to give them to you.

[SunNsand]

Having worked for Dr.s, they TEND to want lab, x-ray or any diagnostic test results to be seen by your ordering Dr. first before you see it. Many times the diagnostic result calls for a discussion between the patient and Dr. Of course there are exceptions, some have access to their labs online. You can always get copies of your labs from your physician's office.

[stuharrisonsf]

Hi Lucky. I always get my lab results sent to me at the same time as they are sent to my doc(s).  You just have to give them your fax number (yes, they still depend on faxes) at the time you present your order paperwork.  You may have to complete a disclosure permission sheet, which in my state (CA) is valid for 6 months. At every step of the process, each time you see a technician referring to a computer screen, check to see that you have been included as a recipient.  This sure does reduce the stress of the waiting/calling/pestering game.  Good luck.  Stu.

[Trey]

In general, 70mg Sprycel daily is considered by Oncs to be "low dose".  But that is not what we would call low dose. 

You would want to get the results of the following study:

https://ash.confex.c...Paper32124.html

Here is some data regarding 4 patients on lower dose Sprycel:

http://www.ncbi.nlm....les/PMC3018898/

[Johnc]

I APRECIATE EVERYONES REPLY, KEEP REPLYING BUT IT WILL TAKE ME SOME TIME TO DIGEST ALL THIS.

THANKS SO MUCH!

Johnc