22 replies to this topic

[rct]

We've been all the way to Oregon to look at this.  Current thinking is that it is some other as yet unknown auto immune idea causing severe myleosuppresion.  When she stops TKI for long enough, her counts begin to come up.  When she stops long enough to move her counts up, PCR is already too far up.

 

There is a history of heart irregularities that they look at that prevents them from changing drugs, even to see if it changes her blood counts.  They also don't believe it is worth all that just to get blood numbers on paper to match what they think is right.  She does not get sick, has not had any form of fever or bad infection since having her counts monitored so closely, so they are less and less alarmed about it as time goes by.  She wants to stay with what works, she fears the change will cause irreversible disaster, something they used to sorta preach but don't so much anymore.  She has seen the other side and doesn't want to go there.

 

Quite frankly, the numbers on the blood draw are just good ideas, nothing in concrete for any doctors, so the oncs are glad they have succeeded in putting her in remission and want her to stay there no matter what her counts are.

 

For a year plus now she has had no treatment at all for low counts.  ANC as high as 900, back down to 100.  This draw at 600, an improvement over previous quarter, but accompanied by the smallest rise in PCR.

 

rct

[Dona_B]

Pam,

I'm sorry that happened.

I thought we would be further along than that. Over 28 years ago, I had a new car that used oil. I voiced my concerns to the dealership mechanic and was told, "Laaaady, you want you car to use oil." We promptly traded that car for a vehicle from a company that valued the customer a little more. It's so much worse being treated badly by a doctor.

Hoping you find an onc that truly listens and that you can trust each other.

Maybe one day you can rate this doctor with more tact and understanding than he showed you and save another person some time and aggrevation.

[Gail's]

Rct You said
It wasn't very long ago at all that there were courts and suits and lawyers to GET people these drugs, and it saddens me to see how short the memory of the only CML village there is.

I agree we may be jumping the gun on saying cml can be cured. But the flip side of the point you make is that the short time since intro of the drugs hasnt allowed much research on the long term. Meaning, yes tkis are miraculous drugs for us, but we dont really know much about what happens if you continue for 40-50 years or you stop at some point after pcru. Without the cessation trials, the oncs will continue to say it must be taken for life. Im early in the process but eagerly await the conclusion of the trials to see if it would be possible to stop. I think oncs give their opinions (most of the time) based on what medical literature says to do. I applaud brave folks like scuba who are willing to make an educated decision about stopping. Not saying everyone should do it, but his was a well-researched decision, he has set up a system of frequent monitoring and will go right back on the drugs if his numbers go up. Not someone just lightly saying screw these drugs.