44 replies to this topic

[Marnie]

Hi, Adela. . .

Your doctor is working for you, and all of your blood test results belong to you. There are certainly some patients who simply follow their doctors instructions without getting involved in their own treatment.  However, it is so much smarter to be a partner with your doctor in your treatment.

My oncologist knows that I expect copies of all of my lab work, so he prints it out before he even sees me.  He doesn't often forget, but if he does, I simply ask for a copy before I leave and he has the nurse print one for me.  My doctor knows that it's not that I don't trust him, but that I simply want to maintain my own set of records at home.

You could easily call his office and ask them to print out a full set of your lab results and have them ready for you at the front desk, or if you're not comfortable with that, simply tell your oncologist that you want to maintain a set of records at home, and so you'd like copies of all records to date.  Most offices have electronic records now, so it's a simple matter to pull them up and print them out. 

And you have every right to have a copy of them.  You are paying for them, and it is in regards to your disease management. 

Good luck. . .the further along you get in this journey, the more comfortable everything becomes.

Marnie

[hannibellemo]

Ditto, Adela, on what Marnie said. Even if I just went in for blood work and didn't see the doc that day, they faxed my results to me (the nurse always called and went over them with me first). It may not be what they expect, but it's amazing how easily the docs are trained as to what we expect!

Pat

[Marnie]

Adela,

    

I remember feeling exactly the way that you do.  It's intimidating to learn how to navigate the disease, the doctor's office, and all of the information involved with cml.  I would have to work up the nerve to ask for a copy of my blood test results each time I was at the lab.  It seems silly now that I made a big deal of it in my head.

Now, after each visit to the oncologist, I start a list of questions that I want to ask at the next visit.  Each time I think of something, I add it to the list.  Then when my 3-month trip to the doc's office comes up, I print it out and bring it with me.  On every list, I always write a reminder to get test results. I even highlight it in red to be sure that I don't forget!  You'd think that after 5+ years I wouldn't have to write myself a reminder note, but I do.  I prefer to blame the medication rather than old age . 

Best,

Marnie

[Susan61]

Hi Adela:  I have not been on here as much as I would like to, but I am just reading all the posts and answers.  You are newly diagnosed, and your going to have a tendency to worry about every little number.  I have been running with a low WBC count for over 10 years now. It is always in the 3.5 range, and I have become anemic with a low count also.  I am not talking one or two years, but over 13 years of low blood counts.

I have low platelets all the time etc.    I go every 3 months for a blood test, and my doctor monitors my numbers.

I have had some terrible eyebleeds from the Gleevec, but I have never had my Gleevec dosage lowered.

The eyebleeds clear up, and have had them last as long as a week or more.  Try not to get worried over everything, because your doctor will let you know if he is concerned.

     The other thing you asked was about getting copies of all your tests.  They are your tests that you paid for, and you have a right to get copies of anything.  My husband has a lot of health issues like me.  I keep two files.  One on each of us, and if something comes up all I have to do is refer to my folder to see what I need.  Also, if I have to go see another doctor I bring copies of different tests to avoid them repeating the same thing on me.

    You can see that we all have dealt with similar issues, and we are all here to help you.  I have actually gotten better advice sometimes from others who have experienced what I have than I got from the doctor who never had CML

    Like I said your so new to all this, but you will learn as you go.  Your body has to adjust to this drug also, and it can change a lot of things from month to month.

Take Care

Susan