Angry At Missed Opportunity For Yervoy Clinical Trial

I clearly hear your anger and frustration. 

Not to sound scolding, but informative………let this be a lesson.

No matter where one goes and no matter the credentials; people drop the ball.  This is why I have said more than once there is NO best place for melanoma treatment.

The best is where there is an open, clear, concise  and timely exchange  of relevant information with the patient being an active participant. as the one in charge in the decision making process.

  Clearly in the case of your mother, this did not happen because expectations were not met.

So, what to do?

First, as clearly as you can, reduce your thoughts to writing .  Difficult as it is, separate your emotions and stick to the facts about quality, availability of care and the lack of choice, and poor communication. that limited  the options for the care of your mother. 

I do not say this as a foundation for legal action, but  the patient MUST be assertive when the care of doctors is in question.  Tell them. 

This is the start of a true working relationship with a doctor.  But they must be told.

They don't respond?  Go someplace else.   Never be afraid to tell a doctor to his/her face they are fired and tell them why.

They do respond?  Use it as a base for a way forward based upon an understanding of expectations and stand resolute.

Sad to say, but trust no one, follow up always, verify and get things in writing. and put all the information in a three ring binder.  It is surprising how responsive people are when you whip out your binder with written communication that something was supposed to happen when it did not.

As always, her chance so her choice.  She is driving the bus here.

I get the sense that interferon is a forgone conclusion.  It should not be until your concerns are addressed or it may be a messy road ahead.

I'm certainly in no position to be speaking about religion, but is it not true that somewhere it has been said  or written that t "the Lord helps them who help themselves"?

My best to you and your mother.

Charlie S

I clearly hear your anger and frustration. 

Not to sound scolding, but informative………let this be a lesson.

No matter where one goes and no matter the credentials; people drop the ball.  This is why I have said more than once there is NO best place for melanoma treatment.

The best is where there is an open, clear, concise  and timely exchange  of relevant information with the patient being an active participant. as the one in charge in the decision making process.

  Clearly in the case of your mother, this did not happen because expectations were not met.

So, what to do?

First, as clearly as you can, reduce your thoughts to writing .  Difficult as it is, separate your emotions and stick to the facts about quality, availability of care and the lack of choice, and poor communication. that limited  the options for the care of your mother. 

I do not say this as a foundation for legal action, but  the patient MUST be assertive when the care of doctors is in question.  Tell them. 

This is the start of a true working relationship with a doctor.  But they must be told.

They don't respond?  Go someplace else.   Never be afraid to tell a doctor to his/her face they are fired and tell them why.

They do respond?  Use it as a base for a way forward based upon an understanding of expectations and stand resolute.

Sad to say, but trust no one, follow up always, verify and get things in writing. and put all the information in a three ring binder.  It is surprising how responsive people are when you whip out your binder with written communication that something was supposed to happen when it did not.

As always, her chance so her choice.  She is driving the bus here.

I get the sense that interferon is a forgone conclusion.  It should not be until your concerns are addressed or it may be a messy road ahead.

I'm certainly in no position to be speaking about religion, but is it not true that somewhere it has been said  or written that t "the Lord helps them who help themselves"?

My best to you and your mother.

Charlie S

I clearly hear your anger and frustration. 

Not to sound scolding, but informative………let this be a lesson.

No matter where one goes and no matter the credentials; people drop the ball.  This is why I have said more than once there is NO best place for melanoma treatment.

The best is where there is an open, clear, concise  and timely exchange  of relevant information with the patient being an active participant. as the one in charge in the decision making process.

  Clearly in the case of your mother, this did not happen because expectations were not met.

So, what to do?

First, as clearly as you can, reduce your thoughts to writing .  Difficult as it is, separate your emotions and stick to the facts about quality, availability of care and the lack of choice, and poor communication. that limited  the options for the care of your mother. 

I do not say this as a foundation for legal action, but  the patient MUST be assertive when the care of doctors is in question.  Tell them. 

This is the start of a true working relationship with a doctor.  But they must be told.

They don't respond?  Go someplace else.   Never be afraid to tell a doctor to his/her face they are fired and tell them why.

They do respond?  Use it as a base for a way forward based upon an understanding of expectations and stand resolute.

Sad to say, but trust no one, follow up always, verify and get things in writing. and put all the information in a three ring binder.  It is surprising how responsive people are when you whip out your binder with written communication that something was supposed to happen when it did not.

As always, her chance so her choice.  She is driving the bus here.

I get the sense that interferon is a forgone conclusion.  It should not be until your concerns are addressed or it may be a messy road ahead.

I'm certainly in no position to be speaking about religion, but is it not true that somewhere it has been said  or written that t "the Lord helps them who help themselves"?

My best to you and your mother.

Charlie S

I am not sure this advice will be helpful, but you may want to ask for clarification as to when the 12 week clock began.  When my husband entered the same trial, we heard several different opinions as to whether the clock initiated from the time of SNB or completion lymph node dissection.  Perhaps you could argue that the purpose of the radiation was to declare your mom clinically free of disease, and therefore the clock should start there?  I think a lot of these "requirements" are highly subjective. Even if you can't convince your current doctor, you might be able to enter the same trial at a different site…  Interferon will always be an option so you could try to pursue other options before committing to this route…

Best of luck!

I am not sure this advice will be helpful, but you may want to ask for clarification as to when the 12 week clock began.  When my husband entered the same trial, we heard several different opinions as to whether the clock initiated from the time of SNB or completion lymph node dissection.  Perhaps you could argue that the purpose of the radiation was to declare your mom clinically free of disease, and therefore the clock should start there?  I think a lot of these "requirements" are highly subjective. Even if you can't convince your current doctor, you might be able to enter the same trial at a different site…  Interferon will always be an option so you could try to pursue other options before committing to this route…

Best of luck!

I am not sure this advice will be helpful, but you may want to ask for clarification as to when the 12 week clock began.  When my husband entered the same trial, we heard several different opinions as to whether the clock initiated from the time of SNB or completion lymph node dissection.  Perhaps you could argue that the purpose of the radiation was to declare your mom clinically free of disease, and therefore the clock should start there?  I think a lot of these "requirements" are highly subjective. Even if you can't convince your current doctor, you might be able to enter the same trial at a different site…  Interferon will always be an option so you could try to pursue other options before committing to this route…

Best of luck!