Given WRONG Dose of Chemo Meds: Double Check Your Doctors

kaydeesmiles

Hi everyone, I'm starting this thread after being given an incorrect dose of chemo drugs.

I hope that sharing what I went through will encourage other people to "do the math." It's easy and could go a long away in protecting our bodies and peace of mind.

I have some sample calculations below - please feel free to add your own methods and experiences.

Before I started Taxotere-Cytoxan chemo treatment this month I met with my MO and asked him what my dosage would be. He said in my case it would be 75 meters squared of Taxotere and 500 meters squared of Cytoxan ( times my body surface area)

During that visit the nurse measured my height and weight (to get the BSA) and input them into the computer system.

On my first infusion day I was weighed again, my meds were mixed and then pumped in through the IV.

After that... nearly two weeks of awfulness. You name the side effect and I had it. Severe joint and muscle pain, constipation bad enough to send me to the emergency room, migraines, mouth sores the list goes on. The ordeal made me want to really know the details about what was going into my body - and how the onc was determining how much of it I would get.

So I calculated my own body surface area and multiplied it by the standard dosage... and the numbers I came up with consistantly indicated that I received a HIGHER dose that I should have gotten.

When I met with the doctor during my follow-up labs I raised my concerns. I was sure that someone had used the wrong weight to calculate my dose since that has been in flux since surgery. They re-weighed me as they always do. And it turned out that they did use the correct weight on infusionday. But I also insisted that they remeasure my height... and that turned out to be the problem. "Someone" had entered the wrong height into the system, meaning the chemo meds were prepared for a taller person... someone with more body surface area than I have.

Scary.

This error could have happened over and over again - because while chemo patients are routinely weighed before every round... their height is rarely remeasured.

A mistake of a half-dozen centimeters or so may not seem like a big one. But when dealing with drugs this powerful, potentially life and health altering drugs, I believe accuracy is paramount. It also completely shakes your confidence in the doctor and his/her team. If they've made this mistake, what others are they making?

The rather non-chalant response of "oh we'll just change your height in the system" really bothered me. Mistakes like this should not happen - and if/when they do they should be taken very seriously.

BSA may not even be the best way to determine how much of a drug an individual can process properly. It may have more to do with how a person's enzymes break down the meds. But if a patient is already not breaking down and eliminating the drugs efficiently - giving them an even bigger dose than is standard could make them have a much harder time getting through treatment.

Here's how I double-checked my doctor's calculations (and I'm by no means a math whiz so anyone can do this)

1.) Input height and weight into an online Body Surface Area calculator.

I use this one:

http://www.medcalc.com/body.html

I usually select the "Dubois" calculation method from the dropdown box because that formula always gave me the largest BSA and I was trying to give the doctor the benefit of the doubt. But the numbers NEVER matched, mine were ALWAYS lower.

Here's a sample calculation:
Height: 5 feet 5 inches (enter 65 inches into calculator- or convert to centimeters if you prefer... I do)

Weight: 135 lbs (enter 135 lbs into calculator or convert to kilograms)

Press "calculate"

Body Surface area = 1.674

2.) Multiply the BSA by the standard dosages...

     Let's use Taxotere.

     The standard dose suggested by the manufacturer and used by my doctor is 75 meters squared.

     So 1.674 X 75 = 125.55

And that's your dose  125 ml

It really disturbs me that I have to be this dillegent and spend so much energy on this at a point when I am physically sapped and metally drained. I would love to feel like I could just turn all the details over to people who would get it absolutely right every time. But after their mistake if feel like I don't have that luxury. I hope all of you are in much better hands - and if you do want to calculate your dosages - that's it's just out of curiosity and not out of necessity.

    

leggo

Hmmm, I don't know of one single person that's weighed before every chemo infusion. I guess they do things differently in Canada. I'm curious to read other responses from my Canadian sisters. Did you guys get weighed every time. I only got weighed when I was scheduled to see the onc and I know for sure my weight was always fluctuating between those appointments. Will be following this thread with interest.

Melrosemelrose

I got weighed on infusion day right after I checked in.  As for the calculation of the amount of chemo I was to receive, my onco had to review my lab blood work and my weight/temperature/ bp numbers before signing the drug pharmacy order for the IV drugs and chemo.  The infusion staff has two infusion nurses check and recheck the drugs and chemo before administration of anything.  Perhaps it's time for your infusion center to review its procedures to ensure that this error doesn't happen again.

makingway

Ladies-I've been to a lot of different clinics/hospitals because I help people with the cold caps to save their hair during chemo. In almost every case the patient is weighed but, I do recall being at a facility where they didn't do this. When the nurses do the 'doublecheck' it is to ensure that the dosage of that particular drug is going to that particular patient-They do NOT review the calculations! When the doctor reviews the bloodwork the most important concern they seem to have is the white cell count. This is because they can't administer the chemo if the count is too low... Therefore, this is why I believe most facilities insist upon the Neulasta injection. To ensure that you don't miss any appts., and they don't lose any $$$. I was at a well known Oncology Center where they wouldn't even schedule an appt. unless the patient had agreed to have Neulasta injections. Each injections is @$6,000.00. Yep, that's the right number of zero's.

jc254

My neulasta shot is billed to my insurance company at $13,000.  The insurance reimburses the hospital $9,000. Fortunately, I don't have to pay the difference!

Anonymous

I was treated in Sedona AZ and was weighed every time I went in for chemo infusions.  Weighed, BP, pulse oxymeter and temp.

Claire in AZ

SpecialK

I had a vitals check (BP, pulse, temp), a CBC drawn, and was weighed prior to each infusion.  I was seen by my oncologist prior to each tx to review side effects and generally discuss how I was feeling.  My center has in-house pharmacy for chemo drugs and they were not mixed until my physician reviewed the vitals, weight, CBC and spoke to me during the appointment, and then he sent the order to the pharmacy for the specific pre-meds and chemo drugs.  I received TCH every three weeks, but also had a weekly CBC during the two off weeks between tx to check my counts.

ruthbru

 I saw the oncologist, was weighed, BP taken etc. etc. before each infusion. Did you mention this mistake to your oncologist (not someone else on the staff)? If not, you should do so and express your STRONG concerns. If no one seems to care, there must be some system under which you can register a complaint.

kaydeesmiles

Ruthbru -

My onc was out during my follow up appt. this week so I saw a different doc. But believe me, EVERYBODY in that office will hear about the mistake during every encounter with me from here on out.

ruthbru

Good, they should.

dltnhm

What I think many of you are missing is that an 'input' error was made. All of the safeguards of weighing and measuring each time do not account for the human error in entering the height into the computer. Hence the miscalculation.

I was pleased with my oncologist and how information was collected. Although it was crazy stressrful to see the scale climb each week with Taxol during the month of June last year despite running 25-30 miles per week.

Still I think this post is extremely important for all of us who might in the future have chemotherapy again or for those going through chemotherapy now. It pays to be vigilant even when there are procedures in place as Kaydeesmiles was. It is important to not let a chemotherapy infusion and all of its terrible side-effects be simply dismissed as 'some patients have a harder time with chemotherapy than others'. (Not suggesting that Kaydee received that message - but how many times on this board have we seen of women and men go through terrible times and not once seen anyone suggest checking for errors in the calculation of the dosage.) I know I've never seen it questionnned and only saw 2 posts regarding it because I happened to be reading the Cold Cap thread. 

And since reading Kaydee's posts in that thread - I also looked for information regarding the dosage. And found that there are studies that take this dosing a step further - finding that obese patients need to be looked at and dosed differently as well as possibly those who have had amputations, along with pregnant women and the elderly. For some reason Firefox does not enable the posting of links - so I apologize for not being able to give the link to the study.

So I will be adding this information to my files and if the need were to arise in the future for myself or a loved one, I will be double-checking the calculations and dosage. 

Thanks Kaydee!

Diana

leggo

Just for the record, I do get that an error was made. Basing dosage using the wrong height is an egregious mistake. Probably should have eluded to that in my other post. Kaydee, I am sorry you were on the receiving end of such a mistake. I was just really surprised (still am) that patients are weighed prior to each and every infusion. That was not the case for me in any of my chemo experiences. Since there weren't many replies here, I posed my question on another board. I got the answer I was looking for. Nobody at my clinic is weighed prior to every infusion, so I guess protocols differ in some places.

NannaBaby

I got weighed every single infusion, along with CBC and vitals.

My cisplatin was the only one that got adjusted.

My weight varied between 170 and 205.

I also have copies of all my medical records.

I was once told to get a CT with contrast to check for pulmonary embolism, but refused because I am allergic to the CT contrast.  They missed that. Thank god I was lucid. Luckily I got a VQ scan instead, cuz they found 2 clots in my lungs!

Mardibra

I was weighed before every infusion, vitals taken, blood taken, etc. When the tech entered the info into their computer system it would flash red if there was a "statistically significant" variance from previous inputs. This would cause them to recheck their inputs. Although, I only ever had my height taken once so that would never have been caught. After all that I would see the onc and she would review all my stats and then order the chemo from an in house pharmacy. I would then be walked to the infusion room. Before chemo was hooked up the nurse would read the info on the chemo bag to another nurse who was looking at my paperwork and then chemo would begin.



I wonder if the dosing has a +/- tolerance of I.e. 10% or something like that. That might explain why they didn't seem to take it very seriously or why some gals are not weighed at all. Just a thought.

Mardibra

Regarding the nuelasta shots, another reason for the shots is so that you receive chemo on the intended schedule. If you are supposed to get a dose dense infusion every two weeks they want to (as did I)make sure you stay on schedule so that you can receive the intended benefit. If you counts are too low and you cant receive an infusion on time thats probably not a good thing when they know they can stop that from happening with the shot. Plus, low counts are bad for many other reasons...infections, etc I'm sure $$$ plays into it as well...

Pattysmiles

I was only weighed once, two weeks later I started chemo and was never weighed again.

Now I wonder if the chemo was enough! I just finished last one this past week.



Sigh.

Pat

kaydeesmiles

Pattysmiles - that's a constant concern too! I was reading some info linked through the AnnieAppleseed site about the problem of UNDERDOSING as well.

"Body surface area-dosing does not account for the complex processes of cytotoxic drug elimination. This leads to an unpredictable variation in effect.

Overdosing is easily recognised but it is possible that unrecognised underdosing is more common and may occur in 30% or more of patients receiving standard regimen. Those patients who are inadvertently underdosed are at risk of a significantly reduced anticancer effect."

Here's the link if you'd like to read more.

http://www.annieappleseedproject.org/howtocaldoso.html