Herceptin alone

BonnieR · 06-23-2007, 11:29 AM

I am new here. Trying again to post this!
Recently had a bilateral mastectomy. Stage 1, sentinal lymps neg., estrogen +, HER2 +. Chemo not recommended but receiving Femara. Was also suggested I do Herceptin without chemo which is not how it is usually administered. I have not been able to find information about this approach. Has anyone here had this experience??? Thanks!

Odette · 06-23-2007, 06:52 PM

Hi Bonnie,

Sorry to hear about your BC. I do not have new info for you since my situation is very different, but it seems completely reasonable that you are on Femara since you are ER PR pos, and Herceptin because of HER 2 pos. Both of these would be a preventive and should not have many side effects!

Best to you,

Odette

BonnieR · 06-23-2007, 07:08 PM

Thank you for the thoughtful reply Odette. I do understand why Herceptin would be indicated but I believe it is not customarily administered as a solo treatment.So I wondered if there is anyone on this board who may have received it without also receiving chemo.

Kathy S in Tokyo · 06-23-2007, 09:44 PM

I answered in the newcomers' thread, but Herceptin alone is good prevention for HER2 positive types. I have lung mets so I wasn't starting from NED (no evidence of disease) but Herceptin alone was effective in stopping the growth of the lung mets. I had basically NO SIDE EFFECTS! Nice stuff.

Now I'm going to see if I can shrink these mets with a little Taxol added to the weekly Herceptin treatments.

Good luck with all the decision making.

BonnieR · 06-23-2007, 10:33 PM

Thank you Kathy! I appreciated you telling me what NED means too. I have alot of new language to learn as I navigate this new territory.
I guess I would be starting treatment as NED status at this point. I am concerned about whether the drug would be effective as a preventive or prophylatic measure in my case, since it is not used that way normally. I spoke to a physician who conducted a Herceptin study and he said it was "unconventional". And there is the issue of possible side effects. I am glad you did not experience them. Yes, the decision making is daunting. And it is all something of a "crap shoot" based on the best available information... thanks again....

SoCalGal · 06-23-2007, 11:10 PM

Hi,
I was on herceptin for about 20 months. For one year I did it every three weeks and then for 6 months I did it once a month. Herceptin will address the her2nu. The femara will address the estrogen positive.

Both are extremely easy chemo's - I think people call them targeted therapy since they are gene targeted. I don't know your age or history but in my opinion, it's worth any extra insurance to remain mets free. (Her2nu has a higher incidence of recurrance.)

--Flori

Kathy S in Tokyo · 06-24-2007, 01:55 AM

From what I've seen on this list and the internet, Herceptin alone is not so unusual. I'm in Tokyo and Herceptin is only available for stage 4 patients with active mets (probably because of its expense) but my doctor is angry about this as he feels it would be effect at preventing recurrences in earlier staged patients and would save the national health plan folks money in the long run. He's head of his dept. at the Natl. Cancer Center here and is very active in trials and pushing to get drugs approved.

I think I read somewhere of women in Australia and in Great Brittain who had won in court about getting Herceptin at earlier stages too. If your insurance will cover it, I think it is an effective prophylactic.

Best,

mabrooks · 06-27-2007, 12:44 PM

I am getting Herceptin without chemo. Will start Armidex this week - had mammosite radiation. My onc said it is not protocaol but he feels it is the best treatment path for me. I am also estrogen+ progesterone+ and Her2neu3+.
Mary

MAB1943 · 08-06-2007, 07:18 PM

my name is Mary and I had a bilateral mastectomy on Nov 9 2006. I had no lymph involvement, was stage 1. I am her2-positive3+ . I just finished chemo June 2 and had a/c and then taxol and herceptin . Now I am on herceptin infusions every 3 weeks for 90 minutes. The only side effect i am having is the running nose and clogged ears. The chemo did leave me with neuropathy of my toes and fingers. The fingers aren't as bad as my feet. That really hurts at times. Anyone else experience this and I am very interested in anyone on
herceptin solo.

Brenda_D · 08-07-2007, 08:31 AM

I'm getting Herceptin alone at this time.
They started out giving it to me with the A/C, but I asked them wait until I finished with the chemo because to the cardiotoxicity of both the Adriamycin and the Herceptin.
The Onc actually then wanted to wait until after I finished rads because I was getting rads to the IM (inner mammary node) area, so that's what we did.

tousled1 · 08-07-2007, 09:24 AM

Bonnie,

Herceptin is given alone and is used as a preventative. I received a year of Herceptin alone. I tried it every week and also every 3 weeks. I found the every 3 week easier to schedule. I now have mets and am back on Herceptin with chemo.

mabrooks · 08-07-2007, 09:28 AM

Mary (MAB1943)
I have been getting Herceptin alone every three weeks since May of this year. The only side effect that I have had is a runny nose and it seems to lessen after the first week after treatment. I am having more side effects from the Arimidex I started a few a weeks ago. I did not have any chemo at all. My tumor was very small and they removed most of it with the biopsy. Good luck with your treatment.
Mary

MAB1943 · 08-07-2007, 10:08 AM

thank you for the infomation. keep me posted about your treatment.
I am NOT on anything else right now.

dorinda · 08-07-2007, 12:00 PM

hi i am dorinda and new to this site. what does hernu mean. flori mentioned it above. does it mean her2 postive. i know i am her2 positive and maybe er-pr-. i will have to ask my onc. but i know i am not receiving anything that relates to harmones. i have been receiving herceptine and taxol weekly for 26wks. i have runni g nose also.thank you for your information

MAB1943 · 08-09-2007, 12:01 PM

hello dorinda, I am on herceptin because I had her 2 positive cells.
I won't be given any hormone blocker therapy because I was er neg
meaning that my cancer cells are not estrogen receptive. You probably have the same type as me and that is why you haven't heard about hormones. Herceptin is the therapy they use on our type of cancer.
So far I had chemo and then taxol and herceptin weekly and now I am on
herceptin alone every 3 weeks until the end of the year. I also had a mastecomy. I have a runny nose and my sinuses are horrible now. Let me know of your progress. I know you've heard it before but it warrants repeating, you will get through this.
Mary

Mary Anne in TX · 08-09-2007, 01:44 PM

We are all so totally different! Our tumors are different, how we respond to the drugs is different, how we feel about treatment options is different. And I so hope that they are learning from all our differences and adjusting for the "new kids"!
I did what at the time seemed like lots of chemo. If I could do it again, I think I might try one more cycle. As I read the signatures of everyone, I am so amazed at how differently we are treated. I know that they are still learning and a few years from now they will know so much more! I guess I'd just rather do a whole lot on the front end, in hopes of not having to do more later!
I'd stay on herceptin forever if they would let me. I just believe with all my heart that it is not only holding off recurrence, but impacting other things in me as well. I feel like the "old me" of 7 or 8 years ago. I'm still 62, but it's like I'm back incharge of my body again.
For however long it lasts, I am soooooo grateful!
Good luck on your decision! None of this is easy! We're still forging new paths! And please keep us up with your progress!
ma