HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 12-20-2005, 01:54 PM   #1
Liz
Junior Member
 
Join Date: Nov 2005
Location: Chicago
Posts: 4
Smile Help me settle a debate.

This is my first post but I have been an avid reader since my diagnosis in July. Just finishing up my last 3 rounds of weekly taxol/herceptin. My onc would then like me to move me to receiving herceptin every 3 weeks. My sister who has been my advocate from the begining is telling me the studies show that every week is more successful. I see many of you on this sight that receive herceptin every three weeks. Are any of you aware of weekly infusions being better than every 3 weeks? Could you link me to any studies one way or the other.

Thanks for you help!
Liz is offline   Reply With Quote
Old 12-20-2005, 04:19 PM   #2
tammymarie1971
Senior Member
 
tammymarie1971's Avatar
 
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
Liz..I have just decided that I am going to ask my onc to switch me to weekly..Gina who is our resident researcher seems to favor weekly. Maybe you could post her and ask her personally for the reasons for weekly vs. every three weeks. I think that weekly is better for stage 4 like myself..but Gina would probably have much more knowledge on this. What a wonderful sister you have!!
Tammy
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
tammymarie1971 is offline   Reply With Quote
Old 12-20-2005, 06:55 PM   #3
Nicola
Senior Member
 
Join Date: Dec 2005
Location: King & Queen County Virginia
Posts: 59
Debate on Herceptin

Hi Liz,

I am stage four and my onc recommends Herceptin once a week. Hope this helps.

Big Hugs,
Nicola
Nicola is offline   Reply With Quote
Old 12-20-2005, 07:08 PM   #4
Gina
Senior Member
 
Join Date: Oct 2005
Location: Alexandria, VA
Posts: 197
Smile best answer..'it all depends...'

It is a difficult choice and I think you are VERY wise to be considering ALL the options. In very severe cases with massive mets everywhere and very HIGH tumor markers, yes, I think the more frequent the treatment the better. In your case, after just coming off of a pretty standard chemo regimen, hopefully, your CA 27/29 and serum her-2 markers will not be very high and you may very well be able to get by on the once every 3 weeks regimen, as it is very convenient and you really do feel like you are getting "your normal life back" --given all you have just gone through, that is surely a plus.

But it is yet more complex...some folks find the 8mg/kg loading dose for the every 3- week regimen hard to take...hard on the body and possibly hard on the heart. There seems to be some evidence that taking only 2mg/kg weekly is a bit easier on the heart. However, my favorite way to take herceptin is to only take as much as YOUR OWN body requires. To find this "magic dosing schedule" is not easy and requires a lot of trial and error on the part of both the patient and the onc, and unfortunately, most oncs are not comfortable doing anything "unusual", but other dosing situations can be pioneered. Even though I have advanced mets, I was able to manage the 6mg/kg every 6 weeks for over a year and a half. Some folks do well on the less discussed every 2 week schedule...4mg/kg...every 2 weeks instead of the standard 2mg/kg every 3.

Rather than trying to just guess or "pick" a good option, I always think it is better to look at your own individual blood work and case history and try to target the treatment to the REAL you, using something similar to bio-feedback to manage your disease, that is IF you have mets that need to be managed. You do not say if you have mets or are hormonal positive or negative or how many nodes you had or didn't have or how high your tumor markers are...all these things must be taken into consideration, so it is really tough to address your question fully. Given all the variables and all the dangers of her-2 mediated disease, though, I would say it would be best to err on the side of caution and weekly might be the best way to start out, just to be safe.

You also did not mention if you took any Adriamycin in any part of your earlier chemotherapy. That is also hard on your heart and would indicate weekly might be safer. Probably before you make this decision you should get a base line muga or echo of your heart function, if you don't already have one, or get a new test to see how your heart is holding up. (Lots of folks here rely on co-Q10 to support the heart function while on herceptin...although I don't use that alternative, I do rely on adequate magnesium intake and quercetin from foods like onions, leeks, and garlic, to keep my heart strong, plus daily walking. My most recent muga after nearly 7 years on Herceptin was around 68.

So, the short answer is if your muga is good--say over 65...all other things being equal, you could probably handle the 6mg per kg every three weeks and if you have already been on herceptin for a while...you could avoid the 8mg/kg re-loading dose, in MOST cases. However, there is an IMPORTANT exception: if by any measure, your illness is getting worse and worse...pull out all stops, provided your heart and kidney function are still ok and GO FOR THE HIGHEST dose of herceptin (probably the 8mg/kg) that you can access to bring the serum her-2 numbers down very quickly and regain control and management of the disease, particularly if you are her-2 +++ as that is a very effective dosage. In the future, I hope we will all be able to use our tumor markers similarly to how diabetics use their blood sugar counts and then only use as much or as little of herceptin as is needed to keep the serum her-2 numbers in the single digits, the way diabetics use synthetic insulin to keep the blood sugar in check. It is not a perfect analogy, but it is useful. If you would like more specific information, you are always welcome to e-mail me any time at home but you must keep in mind that I am not a doctor and can only advise you based on many years of personal experience with herceptin and the experience of many others I have worked with as a volunteer. But still, it provides you with at the very least, another "take" on a very complex issue. Good luck to you, Gina L. Popp GPopp@Comcast.net
Gina is offline   Reply With Quote
Old 12-24-2005, 10:57 AM   #5
HavahJ
Senior Member
 
Join Date: Dec 2005
Posts: 98
Weekly

Hi! I do weekly because my onc says it's easier on your system to spread it out more. I think they mainly made a 3 week one so that working people could comply more easily.
HavahJ is offline   Reply With Quote
Old 12-25-2005, 07:31 PM   #6
Ginagce
Senior Member
 
Ginagce's Avatar
 
Join Date: Nov 2005
Location: Philadelphia
Posts: 144
Gina

Thank you Gina for your answer to this. My god I had no idea how ignorant of my own disease I was until I came onto this site. May I ask what are tumor markers and how do I find out what mine are?

I am currently on Herceptin every 3 weeks but find the side effects difficult. As I have said before I have had more bone pain on the Herceptin than I ever did on ac or taxol. I could do weekly herceptin and it sounds like that may help the side effects as well as be just as effective.

Thank you so much for sharing your knowledge with us on this site. I am learning so much here.

Ginagce (another Gina)

History:
Dx 97 with DCIS/LCIS one breast - LCIS both breasts
Lump/Rads
Dx 04 IDC
ER+ her2+++ FISH 7
lymph node involved one side
bilateral mastectomies
AC/Taxol
Currently on Arimidex & Herceptin
Ginagce is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:31 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter