Is your Herceptin amount changed per/body weight?

Gina brought up a point that I hadn't thought about in a while. My onc used to be in private practice before insurance forced him into a regional practice. While on his own, I was weighed before each treatment and the Herceptin was mixed accordingly. With this new place, I am weighed, but the Herceptin amount is always the same. I asked about this back in January and they said they only changed the amount if there was a 20% or more weight change.

I hadn't thought about it, but I HAVE had a 20% weight change since then. So this week I'm going to ask my onc or one of the nurses.

What have your experiences been?

Love and light,

Lisa

Just emailed your question to my onc. (I DID lose ~20 lbs this summer.) Will keep you posted.

Jojo,

Hey, I found the 20 lbs. you lost. I'll be happy to send it back to you!

Love and light,

Lisa

[StephN]

Hi Lisa -
Being on long-term chemo seems to make us prone to weight gain. I have not been the same since my Taxol/Navelbine months 3 years ago.

I hold the line pretty close, but my med onc checks my weight at each visit (lately every 3 months). If I gain a kilo he changes the amount. I have had 3 changes so far. That is how precise he wants to be with my dosage. I asked him what about if I lose weight, does he want to know?
He replied that unless it was an unusual or sudden drop of 10 pounds or so, the extra amount was fine with him adn would pose no problem.

My advice - make them give you a higher dose if you have gained weight - even if you have to get Genentech involved!

Dear Lisa,

Below is a section of the information sheet for Herceptin written by Genentech. Notice that the loading does is 4mg/kg of body weight, followed by treatment doses of 2mg/kg of body weight. It's important that you see to it that you receive the right concentration of the drug for proper treatment.

Administration Treatment may be administered in an outpatient setting by administration of a 4 mg/kg Trastuzumab loading dose by intravenous (IV) infusion over 90 minutes. DO NOT ADMINISTER AS AN IV PUSH OR BOLUS. Patients should be observed for fever and chills or other infusion-associated symptoms (see BOXED WARNINGS, WARNINGS, and ADVERSE REACTIONS). If prior infusions are well tolerated, subsequent weekly doses of 2 mg/kg Trastuzumab may be administered over 30 minutes.

Thank you so much for that info. Now if I can just figure out kg v. lb! A math major I wasn't.

Love and light,

Lisa

[StephN]

Lisa wrote:
"Now if I can just figure out kg v. lb! A math major I wasn't."

That calculation is for the pharmacy to do and the nurses to double check. At least that is the way it is done at my cancer center. They even have TWO nurses do the double checking.
I am glad you brought up this question as I feel it is very important that ALL of us who DEPEND on Herceptin get the proper and effective dose to help us fight our pernicious disease.

We need every last drop of that drug to shut down any budding cancer cells!

Hey Lisa, so now you wanna play the "hot potato" game?!?! :-)

Lisa
Mine has changed as I have gained weight...I keep getting more....I am not weighed, but I weigh myself daily....that little dose of depression to get me motivated in the morning...and every 3 weeks when I see the Dr. she asks what I weigh and adjusts the dosage accordingly....must be why I pay so much...I'd like to will my extra 25# to JoJo....
Hugs
Sheila

No way, Sheila. I called first dibs on giving MY 20 lbs. to Jojo!

Love and light,

Lisa

Hi, every body,

Yes, I think the general consensus is to be very careful about the weight. I just know from trial and error and my own weight yo-yoing uP and Down that it can make a difference. I am weighed very carefully on the same scale before each treatment and my dose is adjusted accordingly. I also noticed weight gain on herceptin...before, I weighed in at about 160, since being on all kinds of dosing over the years, my weight has crept up to between 188 and 200lbs!!!! YUCK (fortunately I am nearly 5' 10"--but STILL!!! yikes). Right now, I use the "weigh in" at the oncs office as motivation to keep my weight between 191 and 197 which equates a certain dosing amount, and for all my research skills, alas Metric conversion was not high on my list...smile.

Also, pay attention that you do get the very last drop in the line. Funny story...for most of my treatment I have (thank god) been covered under very excellent private insurance, but during a particularly rough spell, when things got really bad, I was put on Medicare, and I HATE TO SAY it and I hope others have not experienced this, but I was treated differently by the nurses...the same ones who had already treated me as a "privately insured" patient. One difference was not to include the saline line flush following the Herceptin infusion. Many times, this would result in quite a bit of herceptin, literally being left in the line and then thrown in the garbage....besides its high cost (mine is about $7,000 a dose before insurance), I too, strongly feel the dosing needs to be precise. I complained but was told it was "office policy" for Medicare patients as medicare did not cover the extra bag of saline...sighhh.... Fortunately, against all odds, I again recovered...probably thanks as much to anger as anything and eventually got back on private insurance and so now, all is well...Any one else had this experience???

Always good to hear from you all,
Gina