Weekly Herceptin-alone instead of every 3 wks (after chemo/H)

I have been on Herceptin only every three week starting in August 2008 upon completion of chemo.   I will be on it probably forever due to my stage.    I don't have any issue with the every three weeks.  A little fatigue for about 24 hours afterward and the usual drippy nose but nothing more than that.  My fingers have never been good and so they are just a little bit worse than they used to be.    Also, my infusion is only 30 minutes every three weeks and no benedryl.    My muga is at 59 right now.   It started at 60, then 62, now 59.  My oncologist is not worried about it she said it is normal to flucuate a few points.

Jennifer

Gee whiz, it sounds like our mind really does have control of our body!!!

I had the head chemo nurse for my herceptin treatment today, so I asked AGAIN about the difference in dosages when I was on weekly treatments and now on tri-weekly treatments.  She said that the standard dosage is 2mg/kg for weekly and 6mg/kg for the tri-weekly, just like was mentioned by others in this thread.  So I asked her about my particular case (I got 90mg weekly and now I get 300mg so it doesn't add up) and she said that they just round it up.  She also said it goes by what weight you started on and usually they don't change it as your weight fluctuates (why, I don't know) sooooo . . . since I started the weekly chemo/herceptin treatments at 100 pounds (45kg) I got 90mg/week.  I went up to 107 by the end of chemo and changed to the tri-weekly doses at 107 pounds(48.5 kg) so now I get 300mg/week (should be 291 but I guess its rounded up) even though I lost all the chemo weight and am back down to 100 pounds. 

It doesn't all make much sense to me, but I guess I should be happy that at least I got a decent explanation this time.  She's the first one that even attempted to try to explain it.

I originally was on every 3 wks treatment.  After my cancer came back, my new oncologist had me on once a week, which I did not understand, but he insisted.  Later I was told by an oncologist at UCLA that it doesn't make a difference to have it once a week or every 3 wks, only the dose was different.  I was really mad because I had to pay a copay everytime I went in.  After that I told my oncologist that I would not do it once a week and he changed it.  I don't know if not being able to take benedryl makes a difference.  I eventually changed oncologists for that and other reasons.

I've been on Tykerb since Aug. 2009 and just began Herceptin again (3 wk cycles).  Currently in remission.  Next PET in a week or two.  If it's clear it will be my 2nd clear in a row.  Before that, I had something going on for the last 3 years.

Well, if you ever saw the breakdown of the charges for a single treatment, you'd see that weekly makes them a lot more money!  I did every 3 weeks from the start, and never had any problems with Herceptin.  I now do it every 2 weeks because that's how often I have Navelbine, so it saves me from coming in just for the Herceptin.  However, they still take 1 1/2 hourse to infuse it.  However, they recently changed their computer system, and it listed the infusion to be done over 1 hour.  They still did 1 1/2 hours.  Plus the computer added Tylenol and Benedryl as pre-meds, which I've never don with Herceptin, so I told them I didn't want them, didn't need them.  Bet they charge for them, though. 

Sometimes it seems to be about milking some extra charges much like a hospital does.  By taking 1 1/2 hours for my infusion, they can charge more for the extra 1/2 hour.  They charge by the hour for infusions after the initial hour. 

Oh, by the way, my BP is always higher when I go in.  They always check vitals before I see the onc and have my infusion.  They check again during the infusion, and it's always lower.  White coat syndrom!

The doctor cannot charge for meds they aren't giving to you.  If they are, then I would call them on it.  Also, for things like benedryl, the doctor isn't making very little, if any money off of that.  They're probably getting their costs back by the time the insurance discounts, etc.  

Some premeds are necessary.  I've had reaction to Herceptin requiring me to have the benedryl.   It is good to know what your getting, why, and if its really necessary.  It's nice to know we can say yes or no to a regiment.  Doing our homework ahead of time and asking lots of questions and getting solid answers from our doctors so we understand why they want to do something is KEY.

Also, just because something is "standard protocol" doesn't mean it's the only way, or even the best way for every case.  Again, homework, education.

I want to make sure I understand your situation--I'm a little confused about how you got to where you are.  I think from your post it sounds like you did AC but no herceptin and this time you are doing TCH (with the herceptin).  Do they think the recurrence is a new cyst/tumor or the same one (which apparently means they missed some cells)  Did you have mastectomy then or with this new diagnosis? Did you have clear margins originally?  Radiation?  I'm not sure why the specialist was angry they didn't remove your lymph nodes the first time--did they not check your  sentinal lymph node the first time?

From reading your post (although I do hope you can clarify in case I'm reading it wrong) I would not recommend stopping the TC part or the herceptin.  Your cancer seems to be pretty resilient if it decided to come back in the same place after doing AC chemo!  I didn't have diarrhea problems, but I know a lot of women did.  Go back to the forums and under the HER2+ forum is a thread entitled "taxotere, carboplatin and herceptin."  It is very long and very informative with lots and lots of entries and information.  I'm sure you will be able to find some advice for the bowel issues.  As for doing herceptin by itself, I'm not sure if they look at it differently when its a recurrence vs a first diagnosis, but I know the studies and research have shown that it is much more effective when it is done with a chemo regimen.

I hope some other ladies can help you too, but I think you will get many more responses if you post on the thread I mentioned above--it's much more active than this one.  (This one is more for deciding whether to do the herceptin treatments weekly or every 3 weeks and the pros and cons of each.)