32 replies to this topic

[jrsboo]

Yes to the EEG's, I was getting them the first 3 or 4 visits without fail.  Even had some heart xrays done and some breathing tests.  I am a big advocate of the cancer centers attached to research centers................and seeing someone who specializes in CML.

Caroline

[Judy2]

Thanks, Caroline. I am going to get a 2nd opinion from a cancer center. I did have an ekg, I think, In June as I was admitted to the hospital with a kidney stone. No mention of follow up ekgs, though, now that I'm starting Sprycel.

Judy

[jrsboo]

Good!  Remember, it is YOUR body, and you drive the bus.   Keep asking questions until you completely understand.

Caroline

[Judy2]

Update. I just took in my mail and got my application to send to Bristol Myers. My onc. is prescribing 50mg Sprycel once a day. Do you think that is why he is saying no blood work for 30 days after I start the med. and the reason he didn't mention ekgs? Does this make more sense? Thanks everyone.

Judy

[pammartin]

I began Sprycel almost three months ago at the 100 mg dosage, but I went for blood work every week, sometimes twice a week if my results looked like they were going down too fast.  I am sure Trey and several others will have an opinion on your question, but although I am a newbie, this seems like a long time to wait between testing.  I do want to add I may not see the doctor every week, but I have a order from the doctor that is open ended for blood work, two weeks ago I went every day, and used the same order.  They are usually open for 31 days and even if it says weekly, if the doctor tells you to go in more frequently, the same order is used.

I reveiwed your posting but could not find where you said you had an order for bloodwork in a month, or you just had a visit in a month.  If you have a blood work order, check out what is says, if not, I would be asking some questions.  I don't care if your oncologist is having a bad day or not, he/she gets to go home and walk away from all this, you have to live it.  So the hell with is possible bad day, if you are not getting the attention you need, then he is not the oncologist for you.

Take care

Pam

[Judy2]

Hi Pam. Thanks for your reply. My appointment will be  thirty days after I start the Sprycel and that includes blood work. First you have your blood work done, wait one hour and then see your onc. so that when you see your onc. he has your results. Per everyones advice I am calling Monday to make an appointment for a 2nd opinion. Somehow just hoping he is telling me to wait 30 days for blood because I am starting on such a low dose. I so hate to see a new doctor, tired enough from the tumultuous year I had, but I guess it has to be done. Thanks again.

Judy

[pammartin]

Best of luck Judy, I know what you mean about changing doctors, but if you end up not comfortable, then it is time to change.  I have been looking since the second week of diagnosis, but insurance coverage's are keeping me hostage at present.  Even if you are starting on a low dose of any med, when it comes to these TKI meds, they can make some serious changes very quickly in our bodies, I cannot imagine you going a month without some form of blood work, even if was just a basic CBC to check white count, platelets, and hemoglobin.  Hang in there, I can't offer you much advice for long term, I am just beginning to travel this road, but I am glad you are here and asking questions.  Lots of intelligent people comment on questions and comments, so you will have a boatload of info to consider shortly ( I see it has already started).  Take care and keep us posted!

Pam

[Judy2]

Hi Pam. Thanks for all your advice. I feel so bad that you don't  have the option of changing oncs right now because of insurance coverage. Is your onc considered an expert in cml? If not isn't there some regulation that your insurance co. has to cover you, has to allow you to seek expert advice, if an expert is not available where you live? Maybe it's just wishful thinking but since cml is considered a rare form of leukemia I would press the ins co. on this point. 

Judy

[pammartin]

I am in process of fighting with insurance company at present.  Am also fighting with cancer insurance policy I have had through American General since I was 18, yeah that is about 31 years ago!  They should have already sent me a check for cancer diagnosis, but somehow my cancer is not listed, and I turned in a boat load of co-pay bills, supposed to be coverage for that also, they denied every one!  Another fight.  They don't get it, I am not going to go away and once I get fired up I fight till the end.  Amercican General had better watch out! 

[Judy2]

WAY TO GO!!! All the stress we go through fighting with ins., fighting to get our meds, can't be good for our health. The system is so messed up it's sickening, literally as well as figuratively.

Judy

[pamsouth]

I have been, been dx with CML, since 2005 and the paper work and confusionnever ends.  I am pretty good at connecting the dots, that is most of the time, just a pain in the rear.  Unless of course something happens and I got to much on my plate, and didn't get my sleep.

Spent most of the this week on the Phone to Dr. Mayer billing, been going there for 6 years and between her billing and blue cross, each visit, at least 99 % of time the submitted bills get kicked out twice by blue cross, some fault of Dr. Mayer billing and some the way Blue Cross processes.  I go back and forth, trying to get everyone on the same page.  Then I had to call Indiana University, Billing and nurse a couple of time and of course Blue Cross, to straighten out their bill and some questions as to how this billing is going to work should I change doctor or where I do my labs, I tell you, better get your ducks in a row, before it gets away from you and you get stuck with a bunch of bills.   Got my appeal and dispute ready to go out certified Monday's mail.  Sometimes it works, sometimes it doesn't but if it does it will save me $277.00 so worth a shot.

Health care a mess.  Some of these  doctors live in the dark when it comes to what we have to go thru!!!

Actually I had a pretty good day as I am pretty good, most of the time, at spreading my calendar agenda out and prioritizing.

Got 2 services at church tomorrow, singing in our Christmas Cantata.  It is really beautiful will blow you away.

Then at 2pm going to a Christmas Tea with my Bible study group.  Suppose to take 2 dozen cookies.  Ha, went to Sam's club and bought them.  Will transfer them over to a plate.  No one will know whether or not they are home made!!

Remember God's got our rear covered.  Praying for us all!

Love and blessings, Pam

[tazdad08]

Hi Judy2,

I have been on Sprycel for 9 nweeks. My counts dropped quickly. That was a good thing for me. My wbc was over 200,000. I have had 2 ekg's done so far. Mine was a precaution because I was having some discomfort in my chest PRIOR to starting the meds. found a pulled chest muscle in an exray and ultrasound follow-up. It is very rare, but Sprycel can cause some kind of problem between the heart and lungs. I didnt worry, I mean anti-depresants can cause depression. I have benefited a huge amount from Sprycel.

[Judy2]

Hi Tazdad08. I am so glad that Sprycel is working well for you, I  hope all continues to go well. Everyone has given me such great advice, I will be calling to set up an appointment for a 2nd opinion on Monday. I now know I definitely need to be monitored, especially when starting this med. Thanks for your input.

Judy