15 replies to this topic

[nathaliece]

I was dx in 11/10 and began my treatment with an onc recommended by my gp.  He seemed compassionate and knowledgeable.  In January, he sent me to consult with a bmt clinic for "a long term treatment plan".  That meeting was very informative and that is when I learned that I need a PCR every 90 days.  When I went for my labs on day 77 and learned that I was not scheduled for a PCR at my next lab appt on day 91, I asked the nurse to query the onc.  She said he agreed I should have the PCR when I came for labs on day 91.  Well, when I showed up for my labs on day 91, they were not ordered.  I was scheduled to meet with the onc that day and when I questioned him about it, he said he needed to consult with the bmt clinic because there are different variations of the PCR test and he needed to know which one I should have.  I had the PCR on day 105.  When I spoke with him 10 days later, he said he had the results on his desk but needed to consult with his colleagues to interpret the results because "he did not know the parameters".  I am losing confidence in his expertise in dealing with CML and wonder if the PCR test would have occurred if I had not pushed for it.   I am inclined to look for a new onc with more CML expertise and would appreciate hearing from those of you with more experience with this to make sure I am not overreacting.  Thanks in advance for your help.

Nat

[hannibellemo]

Run, don't walk! There should be more knowledgeable oncs in the KC area. If not, St. Louis isn't that far away, you could still see a local onc for more immediate needs.

http://www.siteman.wustl.edu/

http://kccancercenter.com/

There is also a KU Cancer Center in Lenexa, KS.

The hope here is to find someone who has current experience with CML patients and a keeps up with the constantly changing treatment options. As long as you don't experience any unusual issues with your CML you will probably do fine at one of these centers, however, there are a few physicians who specialise in CML only. You could always get a consult with one of them in the future if necessary.

I know there are people on this board being treated at Siteman, associated with Barnes Hospitals in St. Louis. You might post again with Kansas City in the title line.

Good luck!

Pat

[Trey]

Your Onc should not be treating CML patients.  He does not know what he is doing, and he cannot even order your labs on time.  There is nothing good there for you.  Get a new one.

[CallMeLucky]

It sounds like CML is not something this doctor understands, more specifically, it does not seem he is well versed in hematology.  It is not necessary to see a CML specialist if one is not readily available to you and you don't have anything out of the ordinary going on, but at the very least you should see a hematologist/oncologist.  A hematologist/oncologist is trained in blood disorders and will know how to read a PCR test.  They should also be pretty familiar with CML.  If you access to a specialist great, but if not, seek out a competent hematologist/oncologist who is currently treating other CML patients.

Best of luck

[nathaliece]

Thanks to all three of you for your thoughtful responses.  My current oncologist is a hematologist/oncologist with a major cancer center but I don't believe he is experienced treating CML.  This is all so new to me.  I am still practicing law full time and raising my 8 year old son and have been left feeling like I need to quickly educate myself to make sure my oncologist is doing his job.  Frankly, there is not that much room on my plate.  I work really hard to try to stay positive and hopeful.  Your confirmation of my gut instinct has been really helpful.  Merci!

[Tedsey]

Sure sounds like this doctor has no idea how to treat CML.  It angers me when they "pretend" they do and do not immediately "refer out".  CML is not the common cold.  It is a serious form of leukemia.  Although the drug therapies seem to work very well for most people, your care is a matter of life and death.  Like Pat said, don't walk, run.  I wish I had done that with my first onc when she showed she didn't know CML from any of the acute leukemias.  In short, she wanted to give me a stem cell transplant with no evidence that I would fail any of the drugs.

[Susan61]

Change Oncologists Real Quick.  Nothing he did so far has been right in your treatment.  Its  your life, and you can choose to do whatever you have to do.

I switched Oncologists last year.  My Oncologist who was fantastic decided to retire.  The doctor who took over his practice was just learning about CML.

I have done too well for so long to let this guy take over my care.  We sat and talked, and I knew more than he did.  I never went back.

[nathaliece]

Thanks, everyone.  I have an appointment with a new oncologist this week and have my fingers crossed...

[hannibellemo]

I'm so glad! Let us know how it goes.

Pat

[Susan61]

Good Luck  I hope you like this doctor better, and just ask questions.  I always ask questions on everything, and your doctor should be able to answer them.

Let us know how you do at this appointment.

[Tedsey]

One thing I really learned with this experience is that you must not ignore your gut instincts.  Best of luck to you with the new onc.

Teds

[nathaliece]

Thanks, everyone.  I met with the new oncology team at KU and feel so much more confident.  They have a lot of experience with CML and were very encouraging about my two log reduction in 105 days.  All my tests for the next 90 days are scheduled and the burden that has been lifted by making the change is so real.  Thanks again for your support and advice.  I really appreciate it.

Nat

[jrsboo]

Dear Nat,

Hello fellow attorney!  I am impressed that you can still practice!  The fatigue and brain fog have been overwhelming for me, and I am only taking a couple of cases here and there, and all of them are estate planning only.  I have given away all of my litigation clients.  Well, almost all.  Some clients just won't take the hint (make that letter I sent telling them to find a new attorney). 

Anyway, glad you found a better onc!  Good luck, and keep us posted. 

(also: Cute avatar, I just sold my yellow bug about a year ago!  Husband bought his dream car and I took over the 10 year old truck)

Caroline

[cryjohn]

Nat, just read your original post about looking for a new Doc.  I was going to recommend the Kansas City Cancer Center but see you found one at KU that you like and trust (very important).  I have been going to KCCC since May 2010, and very much like and trust my Doc.  He has about 20 CML patients so I feel very confident in his knowledge.  Don't know if you know but KU Cancer Center and KCCC are merging.  Based on the letter I received for KCCC, they think it will open a lot more doors for research, treatment and funding. 

It sounds like you are responding very well to the medicine, 2 log reduction already, that's great!  You have come to the right place for advice and support, this site is wonderful.  I don't post much but do follow these boards and find such comfort, support, and advice that have really helped me through the last 10 months. 

Wishing you and everyone good days,

Crystal

[nathaliece]

Thanks, Crystal.  My previous oncologist was with KCCC, was very compassionate, but did not appear to have CML experience.  He seemed to consult regularly with KU's bone marrow clinic.  I have heard good things about the merger as well.

Nat

[cryjohn]

Wow Nat, that has me curious and worried.  I would be interested to know his name if you feel comfortable telling me through private email on here.  I guess there is a part of me that wants to make sure it's not my Doc.  I would be very surprised if it was, because my experience with KCCC has been completely different than yours.  I'm only 10 months into this and have already had 3 BMB's (diagnosis, 3 mths, 6 mths).  I reached CCYR at 6 months, so now we are doing PCR every 3 months.

If I would have gone through what you have I would have left KCCC a long time ago as well.  It's good to know I now have the option of the experience at KU if I need it.

Take care,

Crystal