6 replies to this topic

[RJeanette7]

Hi there, I actually created this account today for my mom but, I haven't told her about it yet. She's a very quiet person and doesn't talk much about her condition. I think talking to others will help her tremendously though so I hope she tries it out. Anyways quick history: Mom was diagnosed in 2009 with CML and was put on Gleevec. We actually don't know much about the cml even though it's been years. First few months were the hardest and then things kind of went back to norm besides the common side effects from the med. Looking at my mom you would never know there was a thing wrong but, I know she gets sad and I know she hates not knowing what's to come. Her physician gives us mixed answers all the time...sometimes she'll say my mom's in complete remission and most recently she said the gleevec isn't working and we may need to switch to something else. That's where we're at now...she has an appt in 2 months to see if there's been any changes. SO the big problem as of right now is her insurance changed over toBCBS and she is having a TON of trouble with Express Scripts. They have lied to us and given us the runaround for 2wks! She hasn't been able to take her Gleevec in 5 days. Does anyone know what this can do to her?? I'm worried sick and I've had it with these people. She called her doctor on Saturday to tell her she had no medication and the response she got was "there's nothing we can do..this type of thing happens" which is so weird to me because the last time she had an appt her bloodwork was off and Dr. * says Did you miss a dose?! Okay now why was she so worried my mom may have missed one dose but she's not concerned now that's it's been days since she's had it at all.

[Trey]

In order to understand how your Mom is responding to drug treatment she will need to get more specific information from the doctor.  The main test which determines response is a PCR, so she will need to know what her recent PCR tests have shown.  If she can provide you with the recent several PCR results (they are percentage numbers for example like .123%) then we can help you and her understand her situation.  Generally, if her PCR numbers are rising quickly then she needs to change drugs.  Changing drugs is a fairly common requirement.

Regarding missing a week or so of drugs, it is not the best situation but also not  as bad as it may seem.  But if she is losing drug response the doctor needs to focus on changing drugs, not getting more Gleevec.  So your Mom should press the doctor to decide if a drug change is needed.

Others have recently had problems with BC/BS.  Please read this recent posting for more information:

http://community.lls.../message/169149 

Some patients have others post for them here, so your situation is not so unique.  We are here to help you and your Mom.

[PhilB]

RJeanette7 wrote:
 Okay now why was she so worried my mom may have missed one dose but she's not concerned now that's it's been days since she's had it at all. 

I can understand why you would think that was crazy, but there is some sense behind it.  CML is generally a very slow moving disease (hence not being too worried about not being able to take the drugs for a few days as a one-off), but the single biggest factor influencing outcomes is taking the drugs regularly (hence the need to put the fear of God into patients about not missing doses).  If you're 99% compliant then missing a week won't cause a problem.  If you regularly miss doses then you're in big trouble.  The doctor's job is not just to prescibe the drug, but to try and make sure the patient takes it.

As Trey says, you (or your mom) really need to post some numbers to get some detailed advice, but whatever the numbers were that the doctor didn't like they clearly weren't too catastrophic from the fact that she doesn't want more tests for two months.

I would also add that the PCR tests we all rely on are a very long way from being an exact science.  The numbers have a deeply horrid tendency to bounce about which scares the life out of you until you get used to it.  A large percentage of people on here have been there, done that and chewed a hole in the tee shirt.

If you can post the actual numbers then people will be better able to provide either advice or reassurance as appropriate.

[RJeanette7]

Thanks for your response. I have never heard of a PCR test but, again I don't know much at all about all of this...which is pretty sad since it has been so long. I was in my teens when she was first diagnosed and I didn't know where to begin with trying to understand. Her physian never answered questions very thoroughly or offered to get us help from someone who would explain the ins and outs. That's not a good enough excuse but, here I am and I'm trying to understand now. I agree that she should discuss the idea of changing medication rather than continuing to receive the Gleevec...I've convinced her to call today since she has yet to hear anything from Express Scripts. I will have her ask about getting results from these test and I'll be back to share that information as soon as possible. Thanks again.

[RJeanette7]

Thanks for putting it that way that does make a lot of sense. She has never (in 5 years) missed a single dose so I guess that's where the panic came from...we just weren't sure what to expect. I will be back with more info soon. I appreciate you taking the time to respond.

[Trey]

Meanwhile, if you and/or your Mom want to learn some basics about CML and testing, here are a couple resources:

CML Overview:

http://community.lls.org/docs/DOC-1271

CML Testing Overview:

http://community.lls.org/docs/DOC-1273

[Susan61]

Hi:  I have Express Scripts, and they have been very helpful.  There is a special number to call for their Accredo Pharmacy which is for any Specialty Drugs like Gleevec.  Call and speak to someone there, not just the regular Express Script Dept.  You should have a number just for the Specialty Pharmacy to call.

Apparently BCBS is using them for Prescriptions, like I have Aetna with Express Scripts for my drugs.

Sometimes you have to keep calling, don't wait for them to call you.  ALso, if you do not get the right answers you have to ask for their supervisor to speak to.

Hope you get this resolved very soon.

Susan