5 replies to this topic

[rickpister]

I am not sure if my physcian (oncologist and hematolist) is truly looking out for me or lining his own pockets.  I was diagnosed with CML in September of 2010.  The guy saved me.  I had a WBC of 443,000 and now I am in the molecular remission ballpark (PCR 0.04).  (If it matters, I am taking 100 mg/day of Sprycel.)  During my last visit in April he said he would see me one more time in about four weeks and then we would move appointments to once a quarter.  I was really happy about this.  This damn disease is expensive, as we all know, and I wouldn't mind keeping the extra $120 a year.

My next appointment turned out to be today for whatever reason.  All is still well with my counts and I have no complaints about how I feel.  At the end of the appointment he said he would see me in six weeks.  So I said to him, "I thought it would be once a quarter now like you said at our last appointment."  He looked at me and said, "I never said that. We'll meet in eight weeks if you don't want to do six weeks."  My memory may suck but I don't forget about things like that.  Also, this wasn't the first time he forgot about something he told me about the frequency of my appointments.  Anyway, I didn't want to argue so I made my appointment and left.

Does this sound kosher to anyone?  I like the dude but I also don't want to visit him more than I need to.  I would appreciate any input.  If I am worng, I am fine with it.  I want the care.  If I am getting taken to the cleaners, he saw me for the last time.

[jrsboo]

Dear Rick,

I wouldn't subscribe to the "Dr. as G-d" philosophy.  I was also dx the same month as you, been on Sprycel as long, and reached MMR, just like you.  Last visit, the onc suggested that we can go to every 3 months instead of 6 weeks.  But also gave me a cancellable appointment for 6 weeks in case anything came up. 

So long as nothing is concerning you, I would say, go ahead and cancel the 6 week appointment and just have them schedule you in in another month or so.  If all you are saving is 120 bucks, I would say that that is negligable.  But I recognize that it is not my money, it is yours.

Everything in life is a cost/benefit analysis.  Having the onc not remember how long he told you between visits, seems to be smaller potatoes than, say, forgetting what drug you are on, or what your name is.  It seems the protocol is somewhat variable between all the different oncs and cancer centers. 

If you like the guy otherwise, and feel comfortable with him handling your care, then maybe a small discussion with him about being more consistent, and how that would alleviate some of your anxiety would be in order.

I hope that helped.  It is very early here on the west coast, and I haven't had my full cup of coffee.

Caroline

[Susan61]

Hi Rick:  From what you said it seems like your Oncologist knew how to handle your CML.  Every doctor is different in how they schedule.  Your almost at the one year mark, and close to PCRU.  I see my Oncologist twice a year.  I go in July and January, but I get my blood work done every 3 months.  I do a routine blood work every 3 months, but I do my blood work and a PCR prior to my visit at her office so she has everything right there to discuss with me.

If your doctor has no concerns, then ask if you can change your schedule to fit your finances.  I can understand how you feel with medical expenses.

Between my prescriptions and doctor visits it is costing me a lot. I have other problems besides my CML, and I feel like I live at the doctor or the lab all the time.  All you can do is ask.  Good Luck

Susan

[Tedsey]

Dear Rick (& Caroline),

You speedy healers you!  Keep up the good work!  I was dx Nov 2009 and I have yet to reach MMR on Sprycel.  Not even close.  However, since my counts have sort of stabilized, my onc only sees me every 2-3 months (depending on what tests are coming up, like a BMB or PCR and "well' visits).  As long as you feel comfortable with your onc and he remembers the important stuff, I think that is OK.  I understand how frustrating it is when you heard him say something he says he did not.  They never realize how we hang on their every word and PCR they order.  But I think 8 weeks is reasonable being MMR so quickly.  If you begin to feel uncomfortable with this guy, like I did with my first onc, don't hesitate to find another.  This is a very important relationship, big and little things included.

Take care!

Teds  

[Trey]

Since you have not made it through the first year yet, the Onc is right to want to keep an eye on anyone diagnosed with a very high WBC as yours was.  But longer than 6 weeks would also be reasonable.