Stage IIIB ER/PR(-) ...what are you guys doing post-treatment?

Val Pfeiffer · 04-29-2008, 11:25 AM

I'd like your opinions....I have kept going with Herceptin since my main treatments ended in August 2005 (see my signature for details). I had one year of triple dose Herceptin every 3 weeks and since then have gone with Herceptin quarterly. I'm not aware of other options for post-treatment in cases like mine where the patient is hormone-receptor negative. I'm considering dropping the Herceptin, and I want to know if there are other things I should consider.

For those of you in a situation similar to mine, what are you doing for ongoing preventative treatment?

thanks!!
Val

StephN · 04-29-2008, 11:47 AM

Hi Val -
Good to see you. I had forgotten you were doing the quartely Herceptin.
Has your blood work or tumor markers changed at all during this time??

Have you considered one of the vaccine trials?? There is some improvement in that direction, and new ones on the horizon.

What about diet/supplements? I think you are on board there.

I am also hormone neg, and am extremely thankful to be a responder to Herceptin.

Don't forget about getting regular exercise or joining a walking group.

Val Pfeiffer · 04-29-2008, 12:03 PM

Thanks, Steph...

** I've never had blood work or tumor markers, so don't know

** Haven't looked into vaccine trials in the last 12-18 months--I robably should read through them again.

** I still teach spin (indoor group cycling), so exercise isn't an issue

** I take vitamins; and I am trying to eat better -- still love junk food :-)

I was hoping that there was some new magical follow up med that popped up since I have been active on this board...one can dream!!!

Val

Ruth · 04-29-2008, 04:02 PM

Hi Val ~ I am really impressed with the quarterly herceptin. I haven't had any treatment since August 04 when my yearly Herceptin was over. I eat healthier and am happier in my personal life but other than that nothing new!

I'm curious what others say. I too was ER/PR negative.

Ruth

Yorkiegirl · 04-29-2008, 04:42 PM

I am stage III A and am ER/PR Negative.

I haven't any treatment since I finished my year Herceptin in September 2006.

I do still however see my Onc every 3 months for Blood work and markers.

Val Pfeiffer · 04-29-2008, 05:04 PM

I had a feeling that I'd hear that others aren't doing anything (simply because there isn't really anything out there). I could probably continue indefinitely on quarterly Herceptin (I have a great health insurance company behind me), but I'd really like to wean myself off Herceptin, but I'm a little nervous about doing nothing.

I'm thinking about talking with my health plan about paying for me to see a nutritionist who can get me and keep me on a program to get me off the Hostess donuts and other crap that I eat every day. I need to find a way to replace the calories I take in from the crappy food--I can't afford to lose weight--I burn a lot of hyper energy. Weird problem to have, but needs to be dealt with.

Anyway, if anyone else is doing something different, please let me know. I'd love to know how much we've decreased our chances of experiencing a recurrence because of the post-treatment Herceptin; and there has to be a diminishing return with the quarterly Herceptin I've been doing, but the data isn't out there yet (right?) to tell us that...

thanks!
Val

Becky · 04-29-2008, 05:51 PM

Hi Val

It's good to hear from you again. There are a lot of ways to boost the calories without eatting junk. I admit, I'm jealous as I am a real easy keeper and I remember meeting you twice and you are slim but not emaiciated. Nuts, avocados, white or sweet potatoes are calorie dense and not bad for you. Eat whole milk products (yogurt, milk, cheese) instead of low fat versions (the CLA - conjugated linoleic acids are a good omega "6" to get from whole milk dairy). Chocolate is good.

Winter squashes, pasta, peas, beans all have calories but lots of fiber and antioxidants too.

The nutritionist idea is good. Besides more ideas, that person will be able to help wean you off the sugar that you are addicted to and it may actually take a plan and some work (or maybe like cigarettes - just cold turkey).

Whole wheat crackers with hummus (with alittle olive oil) is a good snack (adding the extra virgin olive oil is extremely healthful but adds a whack of calories too).

If you see the nutritionist, please post on what they are having you do and what some of their suggestions are (not that I can do them since I would gain weight just thinking about it but it would be very interesting).

Stay in touch

StephN · 04-29-2008, 06:33 PM

Dear Val -
Wish we had a new "magic" pill or something.

I have to say I am very surprised that your onc does not take any blood for labwork. Seems that if you are on Herceptin that the markers would be a natural to go along with getting the Herceptin.

Maybe you should ask for some blood work to be done just prior to your next quarterly H. Markers are more accurate before the drug. That would give you an idea where your numbers are at least for future reference.

Every 6 weeks I have full labs with two markers - the CA27-29 and CEA.

Good nutrition is really essential for gals like us who can't use a hormone suppressor or other way to shut down the cancer. Read RB's thread on the Greek diet. Even though it is complicated, there are good reasons for balancing the omegas and getting the RIGHT fats.

All the best in going forward.

sassy · 04-29-2008, 07:19 PM

Hey Val!

No words of wisdom for you. I am triple positive, so have a different situation also.

Just wanted to let you know its good to "see" you again.

Sheila · 04-30-2008, 03:48 AM

Val
Great to see you pop in again....I think you will get different answers depending on whether people hav emets or not.....I wonder what Michelle U is doing....I thing her diagnosis was similar. You look great as always so you must be doing something right!!!!

lkc Gumby · 04-30-2008, 05:12 PM

Hi Val,

Interesting that you are still on Herceptin, too. I have neverchanged my Herceptin regimen ( still every 3 weeks ) since Oct 05 I don't have mets, but my onc down here seems to think since I responded so well I should stay on it. Not sure when He'll D/C me.
It's my comfort blanket I guess. The insurances don't balk, they go by the dr rec.
anyway,
I get Zometa every 6 mos as well prophylactively for my bones.and take 2000mgs calcium W/ Vit D I get TM every 6 mos, and PETs annually.
I am on a low fat, no sugar diet, and basically follow the " Breast Cancer diet" I am slim and high energy , so I just eat alot of the " good " foods.
Oh yeah , since I am er/pre neg I swear by Flaxseed, too.
I looked into the new vaccine trial and am waiitng to hear what the enrollment criteria will be. I suspect it will also be for low expressors of HER amplification. ( It will be on your FISH report )
Anyhow, hope that helps!

SherriT · 05-04-2008, 11:10 PM

[this is a copy of my reply from the other thread that has the same 'title']

Val,

I also am also Her2+ and ER-/PR-. My doctor's recommendation was for one year of Herceptin (finished April 2007) and I have had no further treatment since. My doctor has also stated that there really are no further treatments and just to be vigilant in watching my body. I will be having a follow-up CT scan in a couple months, but that is just so we have a bit of a baseline image to follow should another be required down the road--and I tell him I won't be needing another down the road, lol.