7 replies to this topic

[lanadal]

I love that my retirement medical plan through Kaiser pays for my TKI with no doughnut hole, however I am disturbed how little some of the Oncologists know about CML and TKIs. Also I'm finding a culture where I, as a patient, am not encouraged to question or explain what I understand. 

 

I was previously a patient at OHSU (a big teaching hospital and home of Dr. Drucker), where I was encouraged to be informed, treatments were always explained thoroughly, and I was able to attend groups and classes about CML and TKIs. It seems too difficult that at Kaiser I must research my own treatment and then somehow make it seem like it was my Oncologists' idea! I'm pretty shocked and discouraged that the Hematology/Oncology team doesn't seem to seek any current information! I guess I just need them to keep writing that prescription.

 

Is this common? What's your experience?

[chriskuo]

It depends on the level of care you need.  If you started with Gleevec and are doing well with no problems, you may be OK with a local hematologist.  But if you are facing an issue regarding efficacy, side effects, or cessation, you may need to see a hematologist at an academic medical center.  Many local hematologists have only a handful of CML patients and cannot be expected to be knowledgeable about difficult cases.  This may be the reason for you disappointment with Kaiser after dealing with OHSU.

 

I was diagnosed 6 years ago by a local hematologist.  After a year on Gleevec and less than optimal response, I got a second opinion from a CML specialist.  Over the years, I have tried all 5 TKIs until I reached MMR.  I have continued to see the CML specialist quarterly and had a third opinion by a nationally known CML specialist at one point.

 

I would be disappointed if Kaiser did not encourage second opinions.  My insurance company pushed me to get a second opinion early on.

[jmoorhou]

Yes that's how Kaiser is. The Onc's are not risk takers.

[lanadal]

 I thought I was a pretty easy patient and assumed I would just continue on my 400mg Gleevec, but the first Oncologist I saw wanted to up my dose of Gleevec to 600mg because I went from  PCRU to a "weak positive". He only checked the last two results, not any of the past 12 years.   Luckily it's easy to change doctors online with Kaiser!

 

 I would definitely pay out of pocket for an OHSU appointment if I had a tougher issue!

[Dom]

Ianadal, what is a weak positive? I went from .03 to .7 and then, one month later, to .5. Does this match your case? My onc raised my dosage to 600 gleevec.

[tiredblood]

I'm a huge advocate for the patient being an equally important member on their healthcare team, and without having to feel like they have to push the issue. Some patients only want minimal info to deal with and that is fine, but i think sometimes patients don't realize there are times they need to be on top of their healthcare. We have great healthcare here in the US, but it could be so very much better.

I am pleased with my Hem/Onc because I feel he genuinely cares about me as a patient and has a passion for his profession. There is always a survey where the hospital/clinic strives for the patient to be seen quickly, but my doc takes as long with each patient as he or the patient needs and I appreciate that. I usually rate him within the 15 minute window just to appease the surveyors. I'll probably be a 15 minute patient if things continue to go well, but a few of my visits needed to be longer.

There have been a few times I've pointed out to patients things I've noticed in their medical record that they should keep a watch on such as results trending up or down. It is so easy for things to slip through the cracks.

[hannibellemo]

Dom,

 

I don't believe your case would be considered a weak positive as you were still detectable (positive for BCR/ABL in your PCR), In your case you lost a log and MMR. In a weak positive one is moving ever so slightly from PCRU to detectable. It just means that the "undetectable" level is not very deep yet.

 

Your last PCR shows you heading down again, though.

[lanadal]

A "weak positive" at OHSU seemed to be a result that wasn't complete zero, but that had a numerical result almost too small to report.