14 replies to this topic

[pammartin]

Hi Everyone,

Just a quick question, has anyone ever received a call currently or in the past concerning their TKI?  I just had one from Bristol Myers.  First they ask me who my prescribing doctor for Sprycel was, then they ask me the lot number and expiration date on the bottle.  I wanted to know the reason behind the call.  The person explained when someone who experiences a serious side effect is noted, they contact others who are taking the medication, and perhaps adjust the dosage due to possibilities.  Then he stated if he needed further information they would contact my prescribing doctor and their office would be contacting me.  I was told I might not have the side effect myself, but they contact everyone.  This was a very strange phone call, and yeah, it made me a bit nervous.  Anyone else out there getting calls today?

Thanks

Pam

[rct]

How could a multi-national drug company possibly know that you are taking their drug?

rct

[mikefromillinois]

In the case of Bristol Myers, if you are in their Destination Access program or their co-pay program you receive regular calls from them along the lines of "How Ya Doin'?"  I take Sprycel and haven't received a call like Pam's (yet), but I do receive regular well being check calls.  If I do I'll post a summary here.  I just saw my doc last week - he receives a visit from the Bristol Myers rep monthly.  I can only imagine that if there was a serious medical concern on the part of Bristol Myers they would contacts the docs first, and my doc didn't mention anything.

PS - Every time I refill my Sprycel I'm given an info sheet that mentions a # to call about side effects, and so on.  If someone is worried they can always call that number to inquire.

Mike

[Susan61]

Hi Pam:  I am not on Sprycel.  I am on Gleevec, but I have never heard from Novartis to question me on anything.

If I did, and they asked me for the Lot# and Expiration Date, my first thought would be concern over sending out a bad tainted batch of the pill to see if anyone had any problem.  Maybe somebody called in with a serious problem, and they are checking everyone who got their refill from that Lot#.

    I hope your okay, and not having any trouble with your pills.

[pammartin]

Hi Susan,

That was my first thought, I am fine, thank you, as a matter of fact, more than fine.  I just found out a bit ago although I dropped to the 100 mg. of Sprycel from the 140 mg, my labs are still low, neurophil is still at 1.7 and platelets are holding at 165,000 so in that aspect all is well.  I keep thinking there is a problem of some kind out there and they are attempting to discover who has what.  I receive my meds from a mail order pharmacy in Orlando Florida, perhaps they purchase a large amount of meds and this or a similar batch they have on stock has a problem associated with it.  What I found interesting is, the rep did mention the Sprycel Support program, but noted they do not have the information concerning doctor, lot number, expiration date, and batch on med.  He did not seem evasive, instead 'matter of fact' if not for the comment I may be hearing from my doctor after they contact his office was odd.  I also had a thought it was something to do with the 140 mg, but I have heard of others who took this dose, because of blast phase.  I will be curious to see if this goes anywhere, or if anyone else receives a call similar to mine. 

Thanks everyone for your comments, feed back on anything to do with this darn disease or the meds is appreciated!

Pam

[Judy2]

Hi Pam,

I am so glad about your good test results. I think you are really on the right road now.

No call from the Sprycel people but I just discovered a lump on my arm that I think is beginning to turn into a black and blue mark. Between that and my strange clusters of blister like bumps on my legs I've just about had it.

Pam, be careful not to give out too much info on the phone to people you don't know, especially if they ask for social security numbers. You never know if someone got hold of a list from Bristol Myers that they weren't supposed to have. You could call Bristol Myers and ask them if they were calling people. Just a thought.

Judy

[pammartin]

Hi Judy,

First thing I thought of was fraud, even while on the phone.  But all the man asked was my doctor's name, phone number, lot number and expiration date on Sprycel bottle.  Is very odd, especially when I have not heard of one other person who received a call similar to the one I had.  My mind was running amok, after I hung up I wondered if the next delivery would be marked for theft, I have already had a two week supply stolen off the truck, to someone trying to find personal information.  hhhhhhmmmmmmm  a mystery!

Pam

[Judy2]

Hi Pam,

Would you think of calling Bristol Myers and ask them if they or someone who was associated with them was calling patients?

Judy

P.S. I sent you a private message.

[pammartin]

I have plans to call them, I didn't go out today, it was snowing and horrid here, but if nothing else when I take dogs to vet on Friday I am going to call and ask if they were/are calling people.  It sucks the mobile phones don't work here, and they want an arm and a leg for full service on a house phone.  Geez, things have changed a lot in the past six years I didn't have a house phone!

[Happycat]

I would think for traceability purposes (in case a batch is found to have problems after market), the manufacturer would at least be able to trace the distribution of that batch to pharmacies.  I would think the pharmacies would have to supply contact information of customers.

Whatever the reason, it would certainly be disconcerting as a patient. I would likely call BMS to find out if they are calling people, and perhaps the pharmacy to see if they would ever give out your info, and under what circumstances.

Remember years ago, a pharmacist (total scumbag) began diluting cancer patients meds in order to stretch his own supply and save money?  A number of patients had their cancers grow, and I think it ended up being fatal for some.

Pfizer just recently had some BC pills get mixed up, too, didn't they?  If it can happen there, it can happen at BMS, too.

So between manufacturing goofs and pharmacy goofs, there's enough reason to call both and start asking questions.

Also,  when there is a drug alert, it goes out to doctors first, so your doc may know something.

Traci

[pammartin]

Ok, this is the deal, spoke with doctor's office today, they have heard nothing, even checked current email to make sure they hadn't missed something over the past few days.  I requested they call Bristol Meyers, and I am going to attempt to call them also.  I am not comfortable with the call, until a few weeks ago I had not had a phone connected to the land line for years, it was simply there for Internet, but whoever called knew I take Sprycel, now knows what doctor I use, and the fact I have Sprycel in the house, the lot number and expiration date.  I guess there isn't much one can do with the information, so my question remains, why would someone want it in the first place?  More questions than answers.  I hate that!

[pammartin]

Just spoke with Bristol Myers Squibb, there is no documented call to anyone concerning Sprycel or side effects.  If I receive any additional calls, I am too try and discover who the caller is, of course I did do that this time and that was when the called exited the call.  I hope this was a random event, but if anyone else would receive any contact from someone claiming to be from Bristol Myers, I would be very careful about confirming the call and not giving out any information.  In reality I now have no additional information on the call, but at least someone at Bristol Myers has the information. 

[CallMeLucky]

Sadly it may have been someone contacting you for the wrong reasons.  Could have been unethical market research or it could have been someone looking to scam you.  They may have been grooming you for a future call where they plan to try and get more personal information, thinking you will give it to them because it is related to your illness.  Really messed up but there are some real dirt bags out there.  Whenever someone calls you looking for information, if you don't know who they are it is always good to get a phone number from them to call them back at, hang up and call them back when you verify who they are and when in doubt, just don't give the information.

[Taylor]

Weird.  Did you ever get the number they were calling from?  Depending on what type of phone you have, it may have showed it or you can check your bill for the number that called you on that date.  Usually if you plug it into google you'll find sites like "whocalledme.com" or something where people collaborate on scams, etc.

[pammartin]

Hi Taylor,

I am embarrassed to admit we are phone deficient.  We just moved to a rural area around Christmas, I have not had a house phone for six years, the only reason I had a local phone company was for DSL service.  Unfortunately, mobile phone service is horrid at our new house.  The interesting thing is, although I had the phone hooked up, I have no plan attached, I cannot make calls, only receive them, but the number is unlisted.  I have been shopping around for a phone plan, Windstream (local area) is absolutely ridiculous with the fees they want for full service phone, so no way to tell who called me.  I stopped giving my mobile number as contact because there is no service.  This is one of those few times I wish I would just bite the bullet and pay for phone service, caller ID included.  I will check on the Google thingy, I have never heard of it, thanks!