5 replies to this topic

[cleocans]

My onc. finally called me back this morning.  The one who wants to up my dosage of Sprycel.  I told him I was uncomfortable with his decision to up my dosage.  Then asked if I am responding well to Sprycel why does he want to raise my dosage.  He told me I wasn't responding well because I was still detectable.  I then talked about how raising the dosage could increase serious side effects and having to take drug breaks.  I said that would be going in the wrong direction.  He told me I was wrong.  Then I asked about how many CML patients reach PCRU in 6 months (fewer than 1%)  He said I could be one of those if I raise my dose.  I tried to ask more questions but he said he didn't want to argue with me.  Then he said he would let me stay at 100mg Sprycel then slammed the phone down when he was done. 

It was a good thing he called before I left to go lift weights.  Those weights didn't have a chance today, I took my stress out on them!

Kim

[Fas]

Hi Kim,

At least it sounds like you had a really great workout.    I really have issues with doctors who can not get their point of view accross without feeling attacked or second guessed.  We are the ones that take this stuff and our concerns need to be heard with an understanding ear. 

Take care,

Fran

[Tedsey]

Time for another one of us to fire a bad onc.  Sorry you had to go through this.  And the majority of CMLers will never reach PCRU until a better med comes out or there is a cure.  Neverthelss, I hope you get there soon.

Take care,

Teds

[pammartin]

I have a serious problem with doctors who do not allow the patient to have a say in the care they receive.  It sounds like your questions and thoughts have merit, and even if your doctor disagreed with you, the reality is you pay him and he should at least listen to you, it is your decision in the end.

Best of luck with whatever you decide!

Pam

[AliceJane]

2 Things, lol, well more but I will try to be brief;

1. He will not argue? Who the heck is he? God or he who will not be argued with? He works for you wether you pay him or your insurance does on your behalf.

2. He owes you respect and not showing it is RED flag in my book.  He slammed the phone down on you in anger because your life is important to you and you want to be included in decisions? see above, he works for you. Slamming phone down is over the line.

I would keep my eye on him and start looking for other options for Onc

[cleocans]

Thanks everyone.  Yes it was a Great workout!  It helped clear my mind of the stress.  I will be seeking a second opinion from MD Anderson in Houston, TX.  It will be a longer drive if I decide to go there.  But my life is worth the best care I can get!