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Second opinion?

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#1 annette1403989329


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Posted 14 June 2013 - 02:48 PM

Hello!  I have posted once before concerning my new diagnosis and pain.  I will post an update concerning those issues.  Right now I would like to ask your opinion concerning getting a second opinion. I have been diagnosed with CML.  I am not questioning the diagnosis.  I am questioning the treatment I have had thus far. I was put on Gleevec first for a month.  They wanted to switch me to Tasigna after that.  Somebody let the ball drop.  I have been without any chemo for two weeks. I have been doing some reading about Tasigna.  Come to find out, I am taking Trazodone that interacts with Tasigna. I have called the oncologist and the cancer pharmacy for these two weeks.  Finally, I was contacted today, with them saying I would go back on Gleevec until I have been weaned off the Trazodone.  My major concerns right now are: 1. They let me go without treatment for two weeks, even though I continously called.  2. I was the one that found that I should not be on Trazodone and Tasigna at the same time.  3.  I have not seen the oncologist since 4/19/13; just nurse practitioners.  Do you think I should get a second opinion not because I don't agree with the diagnosis, but to see how they might treat me and see how concerns are handled and being able to see the MD?  Thank you and looking forward to hearing from you.

#2 CallMeLucky


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Posted 14 June 2013 - 04:21 PM

I think you have answered your own question.  It's never bad to get a second opinion.  In your case you may just want a better practice that takes better care of its patients.  When it comes to getting your meds, that should be a fundamental high priority, the fact they allowed you to go two weeks without meds does not speak highly of your doctor's practice.  I would recommend getting a second opinion.  They started you on Gleevec, so why the change to Tasigna, especially if you have another drug that is going to be a problem, why not stay with Gleevec?  Maybe there is a good reason to switch but you should understand that and be part of the conversation, at least to the extent that the Dr has explained why you should switch.  CML can be manageale, but it is a very serious illness and it should be treated as such.  If nurse practitioners were qualified to treat us we would not need doctors.  There is a bad trend going on in medicine with nurse practitioners, it is bad enough when you go see your PCP, but if you need a Hem/Onc, you should be able to see the doctor.  CML is a chronic disease, that you should expect and hope to live with for a long time, knowing that, you have to partner with a Dr you trust and can work with for many years.

If you post where you are located in the world, someone may be able to recommend a Dr.

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 annette1403989329


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Posted 14 June 2013 - 05:39 PM

I am in Charlestown, IN.  We are across the Ohio River from Louisville, KY.

#4 annette1403989329


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Posted 14 June 2013 - 05:41 PM

If any one would like to recommend an MD for a second opinion, I live in Charlestown, IN.  We are across the Ohio River from Louisville, KY. Thanks.

#5 Trey


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Posted 15 June 2013 - 10:27 AM

You don't seem to need a second opinion, just an Onc who cares enough about treating you properly.  There is certainly one in Louisville somewhere.

#6 Badger


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Posted 15 June 2013 - 04:27 PM

In regard to the drug interaction, I take a lot of drugs and everytime I'm prescribed something, I use one of the drug interaction checkers online to make sure the doc didn't mess up. Doctors make mistakes or aren't thorough more often than you'd think. Also, check the drug maker's website to verify how the drug should be taken, and whatfoods should be avoided. I don't think your average Joe even realizes that nearly all drugs have a negative interaction with grapefruit juice.

#7 Susan61


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Posted 15 June 2013 - 07:30 PM

Hi Annette:  I do not think you have been treated properly.  Get another Oncologist, and not just a second opinion.

Also if they find the right TKI for you then you can possibly switch to something other than Trazadone.

I have been on Gleevec for a long time, and it has been very good for me.  You do have other choices though with new TKI's that have been added to treat CML.

    Look for an Oncologist who treats many CML patients, that is usually a good indication.  Just because a doctor says he is an Oncologist does not mean he knows how to treat you properly.  I am speaking from Experience, and I switched doctors a few years ago.

   Just check with your local hospital or one of your other doctors might be able to recommend a good Oncologist.

   Let us know how you do.


#8 mdszj


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Posted 15 June 2013 - 08:10 PM

I agree with the other posters as far as dumping the guy you have and getting someone else who will not drop the ball.  The issues you mentioned would be major red flags in my book.  Below is a link that may be of help in searching for a new hemo/onc (or actually any type of doctor) in your area.  It is a list of the nation's best rated doctors.  When I first got diagnosed, the leukemia specialist that my local hemo said I should also visit for a second opinion was listed in here, which gave me some degree of comfort.  Hope this helps.


dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16

#9 pamsouth



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Posted 15 June 2013 - 10:53 PM

Susan,  I don't mean to steal this thread.  So I  will try to keep it short, I know I get wordy.

My EST GFR MDRD IS 56 and my EST CRCL CG is only 49. Remarks; Decrease in GFR If estimated  MDRD/CRCL chronically in this range the corresponds to Stage 3 CKD, Chronic Kidney Disease, this has been going on for about 2 or 3 years I think.  Last Thursday I ask my Hematologist/Oncologist about this, and he said it was BulS, as Creatine and Bun were normal, it was Ok.  He didn't like the formula they est for GFR.  You can go on the internet and key in your age, female weight, and creatinine and it will give you your GFR.  Some reports say Creatinie will stay in normal range until you kidney function is below 60 %.  It is hard to know what to believe and understand it all. 

I called two kidney specialist but they won't see me unless I have a doctor referral.  I called Medicare and they said I don't need referral.  But it seems the specilist wants it.  So I have appointment tomorrow, Mon, with  primary doc and I am going to insist on a referral.  After kidney specialist I am going to St Vincent Cardio.  I have lost 40 lbs and discontinued blood pressure med's Metoprolo and the Triamterene/hctz 37/5/25 has 37mg of blood pressure and 25 mg of diuretic. I am suppose to take it as need, my hands, mainly the left one will swell badly so I take the Triam/Diurectic and blood pressure drops below 100.  I have also tried getting pill form and cutting in half.  Nothing works.  My blood pressure may even be normal but the swelling, make it to where I can't use my left hand very well and my joint will bother me.  So I don't know if it from a kidney problem or not.  Seems like everyone is just guessing?

Meanwhile I ask onc to switch to Sprycel 50mg for about 3 month and if I am at the low CCYR to leave it at 50mg, if not I would go as high as 70mg.  The standard protocol is maybe start at 50mg for a week then straight to 100mg.  But I will try an stay at 50mg.  He was not happy but said he would check with insurance.  I haven't take Gleevec since a week ago Friday as I had a boil on my left elbow and my arm swelled up so am on antibiotic, he wasn't real happy about not taking Gleevec, but if switch TKI need to take a vacation anyhow.

I don't want to lose my kidneys!!!!  I was in Florida for a month and stayed with a school chum I haven't seen in over 50 years she is on kidney dialyses and has a donor friend, that is if the donor passes all her test.  I was in better shape than friend.  If I have to go on a dialyses I would rather just thru in the towel.  I have read several different article and it is hard to know what to believe.  I called the pharmacist and he said Gleevec can cause kidney problem.  Been on Gleevec 8 years.

What is your opinion, as I know you have been on Gleevec  a long time and have a low GFR?

Well I see this turned out quite long!!  I will copy and paste and start a new thread!

Thanks Pam


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