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Advice from those who have switched oncologists

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#1 SB3


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Posted 18 November 2011 - 08:02 PM

I'm seriously thinking of switching oncologists and wondered how those who have done so went about it. I'm newly diagnosed (two months) and just don't have the confidence in my oncologist that I think I should have. I'm currently taking a drug break due to low blood counts -- which would've been caught earlier had she been doing weekly CBC tests (rather than waiting three weeks). At this week's visit, when the low counts were discovered, I didn't even see her -- her nurse acted as a messenger between the two of us. And she's considering lowering my dosage of Sprycel after the one-week break but, again, relayed that information through the nurse. These are two actions that I believe warranted a one-on-one conversation. I've found an eight-doctor hematology/oncology practice that accepts my insurance (and is even closer in proximity to my house). My current onc runs her own practice (albeit within a larger general medicine group). It seems to me that it might be better to be within a larger practice of doctors who have one another to confer with regarding individual cases. How does one go about switching oncologists? Is it as simple as calling and making an appointment? Any advice is appreciated!

#2 CallMeLucky


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Posted 18 November 2011 - 08:23 PM

You could always go with the classic "It's not you, it's me".  Or something more direct like "you're just not satisfying my needs".  In the end you can't escape the uncomfortable part of the conversation.  BUt I think it is perfectly fine to do it over phone.  Just make your new appointment and then call old doctor and tell them you've started seeing some else and can they please send over copies of your stuff.  You may even find a new Onc who is willing to make the call for you and request copies, but many will expect you to do it.

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#3 Marnie


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Posted 18 November 2011 - 08:26 PM

Hi, SB3

I'm on my 3rd oncologist and will be moving to my 4th in January (the current one is simply a product of a switch in insurance coverage by my employer).  It is certainly awkward to switch oncologists.  My first doctor was pretty good, but I lost confidence in him when  I had difficulty getting test results in a timely manner.  I got the name of another oncologist with the same cancer center (there are quite a number of locations in the Denver area) from another local CML person that I met on this forum.  I simply made a phone call and set up an appointment.  Then I typed up a letter and sent it to the former doctor saying that I was switching oncologists.  The second guy turned out to be even worse. . .I always left his office knowing less than when I went in, and feeling stupid.  I found a third oncologist from a motorcycle friend, whose wife, we discovered on a camping trip, had CLL which had morphed into Hodgkin's Lymphoma.  They  loved her oncologist (again, with the same cancer center, but yet another location. . .downtown Denver, ugh).  I saw him and was very impressed, and am even more so, now seeing what Shelly is going thru and how this doc is her champion.  But because of the insurance switch, had to go to an interim doctor who, in my opinion, is the worst of all of them.  I am fervently looking forward to January when I can switch back to the really, really good doc (switching to my husband's insurance because I really can't afford the double-whammy $4000 out-of-pocket twice a year with my new insurance plan).

Anyway. . .in my opinion, you need to switch oncologists until you find one that you trust and like.  You are paying for his/her services, and you deserve to get your money's worth out of your very expensive office visits.  Yes, it's awkward to switch. . .but do it anyway.  For me, it was just a matter of calling and setting up my own appointments, but it was easy because the first three docs all worked in the same organization, Rocky Mountain Cancer Center.  Luckily, at different locations, which made it less awkward.  No chance of running into the old docs. 

Do what is right for you and to hell with the oncologists.  If the doctor isn't coming through (and it sounds like yours is a real loser), then try another one until you find the right fit.

Good luck!


#4 cleocans


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Posted 18 November 2011 - 08:54 PM

Hi SB3 I was about to change oncologists myself.  But I just received a letter from him today saying that he and his wife are moving on Dec 31st.  I am hoping and praying that the new Dr I am assigned to is more knowledgeable in CML and I don't have to go looking for a new oncologist.

Good luck to you!


#5 dlm13


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Posted 19 November 2011 - 10:07 AM

If you do not have confidence in your doc then you should switch to someone else and not be worried about what the old onc will think.  My experience has been that our oncologists see so many patients and they really don't sweat it if a patient moves on to seeing someone else. You are under no obligation to explain yourself or your reasons for switching.  I switched to a different doctor and it has made a huge difference in my outlook and my well being.  Don't worry and do what you need to do.  Good Luck to you.

#6 nathaliece


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Posted 19 November 2011 - 10:51 AM


I made the decision to change once about 4 months into my treatment when I realized my kind, compassionate onc did not know much about CML.  It was the best decision I have ever made.  Best of luck to you.


#7 Tedsey


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Posted 19 November 2011 - 11:36 PM

This always involves way too much thought.  I have been there and seen others struggle with this.  I am on my 2nd hem/onc.  Don't second guess yourself despite your onc being connected to a larger practice.  It doesn't matter.  My first onc was connected to a well-known, university, mega cancer center.  I also hemmed and hawed because of that.  I switched because it became clearer and clearer my first onc had no idea what CML was all about, along with being socially challenged.  The way she treated me left me miserable.  Leukemia is not the common cold or flu.  You DESERVE to get what you want out of an onc and practice.  I would not be happy seeing just the nurse either.  There are good oncologists out there that are also human and kind and show up, in the flesh, to do their job.  Although you need not say anything or give an excuse, what Lucky said, or using the proximity story, (I did this), works well to sever ties (ex. the other practice is better for you at this time because it is closer to home).  There is no law that says you cannot go back to that mega practice in the future (if you ever want to).  This is a life-long chronic illness.  Don't ever be miserable with your treatment if you can help it.

Take care and all the best,


#8 scuba


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Posted 20 November 2011 - 08:07 AM

To: SB3,

Just set up an appointment with the new Oncologist and go.  Have all of your records sent from the first Onc.  They work for you, not the other way around.  The first Oncologist won't care or even know.  But if they ask - you just wanted a second opinion.

You need to have weekly CBC's to monitor low blood counts brought on by Sprycel.  I had/have the same issue.  Low dose Sprycel is what you will end up doing.  Your bone marrow is very sensitive to Sprycel - which in some ways is good.  Once they get the dosage correct, you should see very good response and at the same time have a satisfactory blood system (ANC > 1.0).  It can take a while as Tedsey and I can attest.

Listed below is what Dr. Cortes and my primary Oncologist are having me do.  And so far it's working.  I am on 20mg. Sprycel.

1.  Weekly CBC's until blood settles at your new normal - then monthly after that.  (I am now monthly).

2.  FISH / PCR every 3 months until FISH drops to zero - then just PCR every 3 months. (I no longer have FISH taken).

3.  Bone Marrow Aspirate at six months for cytogenetics and PCR. (Just had what I believe will be my LAST bone marrow - results pending).

4.  Once bone marrow looks normal (your new normal) and PCR has dropped 3 log from where you were - no more bone marrow (my opinion), just peripheral PCR.

5.  Once PCR is bouncing around 0.001% or even PCRu (undetected) - go celebrate (Chateauneuf du Pape, 2007).

6.  After two years PCR - undetected - big decision time.

The key in all of this is finding the drug that works for you at the dosage that balances blood levels and response.  Once you achieve that - then it's just vigilance to maintain the protocol and have yourself checked regularly (monthly for CBC).  I haven't even seen my Oncologist(s) in many many months.  I just go for the blood work and then discuss via e-mail.  Saves a lot of time ... although I am scheduled to visit with Dr. Cortes in person in a week at his request to discuss other things.

In many ways this is a simple disease that has been rendered Chronic rather than life threatening.

Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein


Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.


2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"

#9 Susan61


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Posted 21 November 2011 - 05:24 PM

Hi: I did not even give my new doctor of one visit the courtesy of telling him I was leaving.  One visit ,and him telling me he was changing my protocol etc.  I walked out, and I always have copies of all my records.  I needed nothing from him.  I found my new doctor, and called to cancel with the other guy.  Gave them no reason, just said I will not be back.

My new doctor was impressed with all the records I gave her going back to Day 1 of my diagnosis.

I did not feel that I owed him a thing.  He would not even listen to what I had been through prior to seeing him.

#10 SB3


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Posted 22 November 2011 - 01:03 PM

Thanks for the advice and support, everyone. I have an appointment with a new oncologist in two weeks. I'm keeping my fingers crossed that this one is a better fit.

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