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Re: MSKCC's qpcr

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Hi ,

That sounds frustrating!

Keep in mind that most states, if not all now, have laws in place that

explain what rights patients have for getting copies of their medical

records. You may have to go through MSKCC's records department - give

them a ring and see what they require.

Usually you just write a letter with the dates of the records you want,

what kinds of records you want (I generally cover everything by stating

something like copies of all lab reports, doctors' notes, imaging

studies, bone marrow exams, blood work, etc.) and the purpose for which

you want them. Most institutions are allowed, by state law, to charge $X

amount per page they must copy. (Where I am, I get around this by

stating that the records are for use by a physician at another

institution, so I don't have to pay the copying fees.) I have also found

that simply requesting a copy of the blood work or exams when I see my

doctor also works just fine - the nurse or someone else can easily print

a copy. But you must request this. If you forget to request it, take a

notebook with you and write down everything you want to go over during

the visit, including requests for records. Just don't forget to look

over the notebook! :-)

As far as requiring bone marrow exams more frequently than you desire:

Talk to your doctor about this. It's your body, your decision. Also,

institutions must have in place rules regarding research. In some cases,

for instance, when you first become a patient somewhere, among all the

paperwork you fill out you might fill out a form about consenting or not

consenting to have samples of your " stuff " used in research. You should

find out if you did this. You can always change your mind one way or

another. They can't use your samples in research without your consent.

In any case, if you don't want something done to you (eg, bone marrow),

don't do it. A doctor cannot make you do something you don't want to do.

Still, I highly doubt any institution, no matter whether you've given

consent or not, is going to try to force you to have more frequent exams

than necessary simply so they can get research samples from you.

You really do need to be an advocate for yourself. If you directly ask

your doctors for copies of your records and they flat-out refuse, take

it up with the medical records department. They cannot, by law, refuse

you.

If you can't seem to get your doctor to take time to answer all of your

questions for you, schedule an additional appointment simply to discuss

these issues. Unfortunately, because of insurance and hospital

pressures, many doctors are allotted only a few minutes with their

patients, sometimes less than 15. But most will allow you to schedule an

extra appointment simply for discussion. They just aren't able to take

the time during their normal schedule because it would create a

tremendous backlog.

Hope this helps. Sorry it got so long-winded.

jennifer g.

=======================================

You can make a difference today in the life of a cancer patient

tomorrow.

Please support the Leukemia Society with your donation:

http://www.cmlsupport.com/seejenrun.htm

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[ ] MSKCC's qpcr

Dr. and others: I have some questions regarding the

disorganization

of MSKCC's lab and their qpcr results. If you can give me further

information about your feelings in this matter, I'd appreciate it. I

was at Sloan

last week. I asked for all the paperwork of my results from my Feb.

bma. When

I got home, I realized they failed to give me the qpcr. I have had a

difficult time getting the paperwork on that in the past. I feel like

they don't

want to give it and barely want to discuss it. I do know the results

were

0.005% (because I asked) , but why can't I have the paperwork? I know,

I should

have carefully looked at the papers before I left. Unfortunately, I

didn't

realize this until I got home. I'm also disappointed that they still

want me

to have bma's every three months even though I'm at zero and was

diagnosed

over 14 mos. ago. I wonder if they want me to go through this

procedure every

three months for their own research or for my own benefit. What do you

think?

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Hi ,

> Date: Sat, 19 Mar 2005 11:27:03 EST

> From: nchando@...

> Subject: MSKCC's qpcr

>

> Dr. and others: I have some questions regarding the disorganization

> of MSKCC's lab and their qpcr results. If you can give me further

> information about your feelings in this matter, I'd appreciate it. I was at

> Sloan last week. I asked for all the paperwork of my results from my Feb.

> bma. When I got home, I realized they failed to give me the qpcr. I have

> had a difficult time getting the paperwork on that in the past. I feel like

> they don't want to give it and barely want to discuss it. I do know the

> results were 0.005% (because I asked), but why can't I have the paperwork?

> I know, I should have carefully looked at the papers before I left.

> Unfortunately, I didn't realize this until I got home. I'm also disappointed

> that they still want me to have bma's every three months even though I'm at

> zero and was diagnosed over 14 mos. ago. I wonder if they want me to go

> through this procedure every three months for their own research or for my

> own benefit. What do you think?

You raise a couple of good issues here. First, why does the MSK lab seem so

disorganized? I'm afraid I've been unable to gain any special insight here;

it's been that way ever since I started going there in 11/00, and has gotten

neither better nor worse. Having been out of clinical practice since '96,

and never having practiced in NYC, I'm also not sure whether MSK's lab is

much different from other labs in NY or in New England. I do know that the

state of error control, hospital record keeping and communication with

patients is shockingly bad around the US in general, and my sense is that

this has gotten worse over the past few years, despite much increased

attention to the problem by the major medical societies and by the media.

Medical practices now give greater lip service to " patient empowerment, " but

as far as I can tell, little is really done about it. Basically, in centers

where the culture has not swung decisively toward shared decision making by

patients and doctors, the most effective way of getting your information is

by making a nuisance of yourself - making your desire for complete

information clear whenever you see your doctor, and calling your doc's

office before and after each visit to reinforce this. This even holds true

in my case, and I'm a doc myself.

Of course, this just addresses the matter of communication of results. The

unreliability of MSK in even running the right tests in the first place is

another pet peeve of mine. Mostly I blame the lab, but there are times when

I sense that my doc and of his office staff may also be at fault. Much as I

like them personally, I'm thinking I may try a different center, as I wrote

previouslyh. It's true that New York City medicine is rather famous for

dysfunctional tensions between the professional and non-professional

hospital staff, which make hospital stays unpleasant as well as potentially

dangerous to patients. I thought it might be different in the MSK

outpatient departments, but I'm not so sure. I'm hoping that, say, DFC in

Boston, might be a bit better.

The other issue from your post is frequency of BMA's. I believe it's still

pretty standard to do BMA's on each visit for the first 12-18 months, and

this is probably the protocol your doc is following, but it's not at all

clear to me why they need to stick with that in your case, where you reached

PCRU so quickly. Again, this is something I'd ask your doc, and if he can't

give you a clearly reasoned explanation of the advantages to you, then you

might just ask them to stop. This is your right, after all - you can always

refuse any medical procedure.

I hope this longwinded answer is of some help to you.

Yours,

R

PS - I see that also addressed your questions - with some great

insights, as always. Hi - nice to see you here!

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Hello , and ,

I'd like to chime in on this topic as I also go to MSKCC and have

PCR's. It is quite a concern to me to read what is going on at

MSKCC. I pay pretty much " top Dollar " to go there as I do not have

insurance coverage in the states - I am a self payor. This means

that a QPCR that costs you about $500 on your insurance costs me

about $1200.00 Canadian. It is disappointing to hear their

techniques are so questionable.

My experience is differnt that yours . I usually receive a fax

or e-mail of my results in less than two weeks after the test is done.

The weird thing is that much like , who likes the staff,

people and his doctor at MSKCC, I am in the same boat here in

Montreal. I like the staff, they know my name we chat and they do

seem to give me preferential treatment (which isn't necessary at all,

but it is a nice touch - I do bring them lots of gifts and stuff;-

) )! But, I cannot always realy on getting the results as quickly as

I'd like and I only get the printed results when I am collecting the

information to take with me to Sloan. According to results I have

received from both MSKCC and the RVH, I am PCRU. But now I wonder

what that means.

On the other hand I have been selected to participate in a clinical

trial for patients who are stuck between CCCR and MMR (major

molecular response - new term that some of the experts are starting

to use) but not PCRU. It is called the GLEEM trial, I am not sure

what the acronym stands for. Some patients will be randomized to

higher dose IM to see if they achieve PCRU quicker, if at all, than

those staying on 400 mg. Apparently I am in a control group of

patients who are PCRU and will be monitored closely during one year.

The end of the study should yield interesting results in all groups.

I am excited to see if within the context of a trial, when one

expects that the PCR tehnique will be strictly adhered to, if we will

see any fluctuations in my test results. It might provide more

insight into the variability we see among the centres.

We all tend to get long winded when we communicate about PCR's as

this is a area of such importance to us.

To R. I think s goes to Dana Farber, I wonder if

she has joined this list. There is also a doctor from there who

spoke at ASH, I'll try to dig out his coordinates, maybe you can get

in touch with him and ask him about there PCR testing.

In the meantime my last results from Sloan are at my office, I'll

post them here maybe all fellow MSKCC'ers can discuss the resulst?

, As far as the BMA's go, it looks as if with your results of

0.005% falls into the new category of MMR - not quite PCR. I wonder

if this is what is making them want to do a BMA every three months

with you. Maybe they are just watching very closely to see if you

are developing any resistance which can be cleared up with a higher

dose, that might be stopping you from getting to PCRU. Just a

thought. There seemed to be quite a discussion about this at ASH

Anyway, just thought I'd post this perspective from someone who

travels a good distance to go to MSKCC.

Cheers,

Cheryl-Anne

In , nchando@a... wrote:

I feel like they don't

> want to give it and barely want to discuss it. I do know the

results were

> 0.005% (because I asked) , but why can't I have the paperwork? I

know, I should

> have carefully looked at the papers before I left. Unfortunately,

I didn't

> realize this until I got home. I'm also disappointed that they

still want me

> to have bma's every three months even though I'm at zero and was

diagnosed

> over 14 mos. ago. I wonder if they want me to go through this

procedure every

> three months for their own research or for my own benefit. What

do you

> think?

>

> Thanks,

> in NY

>

>

>

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