Clinical trial question

Absolutely his tumor should be tested for BRAF and you should know the results. Your initial oncologist should have already done that.  All regular labs should be reported to you as well (CBC, thyroid function, UA, liver function, metabolic panel, etc.).  In my opinion ratties also deserve to know the results of the "trial labs" as well…but it is doubtful that you will get those results. In the course of my trial I had dozens of tubes of blood drawn every other week, then every three months, for the "trial studies" in which I'm sure they were looking at immune cell reactions, not to mention the leukophoresis that was done several times for the same purpose. Those results have never been revealed. Nor have the results of my tumor's analysis for PD-L and PD-L1 been revealed though I had to give permission for the testing to be done. (Yes, there is a huge rant on my blog about that very thing!) But, you really must be proactive and find out every bit you can about your husband's status for future planning and in order to keep an eye on any side effects from treatment.  I wish you both my best. Celeste

Absolutely his tumor should be tested for BRAF and you should know the results. Your initial oncologist should have already done that.  All regular labs should be reported to you as well (CBC, thyroid function, UA, liver function, metabolic panel, etc.).  In my opinion ratties also deserve to know the results of the "trial labs" as well…but it is doubtful that you will get those results. In the course of my trial I had dozens of tubes of blood drawn every other week, then every three months, for the "trial studies" in which I'm sure they were looking at immune cell reactions, not to mention the leukophoresis that was done several times for the same purpose. Those results have never been revealed. Nor have the results of my tumor's analysis for PD-L and PD-L1 been revealed though I had to give permission for the testing to be done. (Yes, there is a huge rant on my blog about that very thing!) But, you really must be proactive and find out every bit you can about your husband's status for future planning and in order to keep an eye on any side effects from treatment.  I wish you both my best. Celeste

Absolutely his tumor should be tested for BRAF and you should know the results. Your initial oncologist should have already done that.  All regular labs should be reported to you as well (CBC, thyroid function, UA, liver function, metabolic panel, etc.).  In my opinion ratties also deserve to know the results of the "trial labs" as well…but it is doubtful that you will get those results. In the course of my trial I had dozens of tubes of blood drawn every other week, then every three months, for the "trial studies" in which I'm sure they were looking at immune cell reactions, not to mention the leukophoresis that was done several times for the same purpose. Those results have never been revealed. Nor have the results of my tumor's analysis for PD-L and PD-L1 been revealed though I had to give permission for the testing to be done. (Yes, there is a huge rant on my blog about that very thing!) But, you really must be proactive and find out every bit you can about your husband's status for future planning and in order to keep an eye on any side effects from treatment.  I wish you both my best. Celeste

Ask for a copy of all blood work results as well as scan reports to keep in a personal file.  If you ever need to change doctors then you will have your own copy rather than to wait for copies to be sent.

Ask for a copy of all blood work results as well as scan reports to keep in a personal file.  If you ever need to change doctors then you will have your own copy rather than to wait for copies to be sent.

Ask for a copy of all blood work results as well as scan reports to keep in a personal file.  If you ever need to change doctors then you will have your own copy rather than to wait for copies to be sent.

Bubbles has it right.  The initial, basic workup outside of the trial should have included the BRAF testing.  Ask his original oncologist aoubt the findings and a copy of the report.   As for the PD-1 testing, that was done within the trial as was part of the screening for the trail as it's becoming important for targeted therapy.  That's not shared as it's within the blinded information of the trial. 

At the end of the trial, you'd think they would share the information, yet I don't think they do.  I'm not even sure we will know what drug they were giving us.  I do know for sure if I fall off the trial for tocicity, they do not share what drug I was getting.  That seems odd to be a it's important for future treaments.        

Bubbles has it right.  The initial, basic workup outside of the trial should have included the BRAF testing.  Ask his original oncologist aoubt the findings and a copy of the report.   As for the PD-1 testing, that was done within the trial as was part of the screening for the trail as it's becoming important for targeted therapy.  That's not shared as it's within the blinded information of the trial. 

At the end of the trial, you'd think they would share the information, yet I don't think they do.  I'm not even sure we will know what drug they were giving us.  I do know for sure if I fall off the trial for tocicity, they do not share what drug I was getting.  That seems odd to be a it's important for future treaments.        

Bubbles has it right.  The initial, basic workup outside of the trial should have included the BRAF testing.  Ask his original oncologist aoubt the findings and a copy of the report.   As for the PD-1 testing, that was done within the trial as was part of the screening for the trail as it's becoming important for targeted therapy.  That's not shared as it's within the blinded information of the trial. 

At the end of the trial, you'd think they would share the information, yet I don't think they do.  I'm not even sure we will know what drug they were giving us.  I do know for sure if I fall off the trial for tocicity, they do not share what drug I was getting.  That seems odd to be a it's important for future treaments.        

Speedster, has a good point and an important question to ask. Most trials, if arms are blinded…should you fail to improve with the treatment arm you are getting….generally you are unblinded. That means you are told the drug you were getting….though you still may not be told of all the lab results and special studies that may have been done. Some trials allow for 'cross over'. This means that if you are not doing well on the arm of treatment you are on…they will allow you to cross over to the other treatment being offered. These issues are most often encountered on Phase 2 and 3 trials as they more often have control arms. Phase 1 trials (like the one I am in) give everyone the 'drug/treatment' though it may be at different dosages, but these trials are early in the testing and technincally are "to determine dosage" of meds whose effect we are not sure about.  So…all this to say…ASK! Ask if you will be unblinded…if that is pertinent. Ask if you will be allowed to cross over (if this applies). Ask what labs you will be informed about, which ones not, how, and why. Trials are great. I am certain I would not be otherwise. But…they are not for the faint of heart. I wish you well. C

Speedster, has a good point and an important question to ask. Most trials, if arms are blinded…should you fail to improve with the treatment arm you are getting….generally you are unblinded. That means you are told the drug you were getting….though you still may not be told of all the lab results and special studies that may have been done. Some trials allow for 'cross over'. This means that if you are not doing well on the arm of treatment you are on…they will allow you to cross over to the other treatment being offered. These issues are most often encountered on Phase 2 and 3 trials as they more often have control arms. Phase 1 trials (like the one I am in) give everyone the 'drug/treatment' though it may be at different dosages, but these trials are early in the testing and technincally are "to determine dosage" of meds whose effect we are not sure about.  So…all this to say…ASK! Ask if you will be unblinded…if that is pertinent. Ask if you will be allowed to cross over (if this applies). Ask what labs you will be informed about, which ones not, how, and why. Trials are great. I am certain I would not be otherwise. But…they are not for the faint of heart. I wish you well. C

Speedster, has a good point and an important question to ask. Most trials, if arms are blinded…should you fail to improve with the treatment arm you are getting….generally you are unblinded. That means you are told the drug you were getting….though you still may not be told of all the lab results and special studies that may have been done. Some trials allow for 'cross over'. This means that if you are not doing well on the arm of treatment you are on…they will allow you to cross over to the other treatment being offered. These issues are most often encountered on Phase 2 and 3 trials as they more often have control arms. Phase 1 trials (like the one I am in) give everyone the 'drug/treatment' though it may be at different dosages, but these trials are early in the testing and technincally are "to determine dosage" of meds whose effect we are not sure about.  So…all this to say…ASK! Ask if you will be unblinded…if that is pertinent. Ask if you will be allowed to cross over (if this applies). Ask what labs you will be informed about, which ones not, how, and why. Trials are great. I am certain I would not be otherwise. But…they are not for the faint of heart. I wish you well. C