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Posted 5/9/2005 7:56 PM (GMT 0)
Can anyone tell me a little about herceptin, is it a chemo drug or what? I read that it can be taken weekly, if its chemo do you get all the side effects like chemo? I read the article that mnlady 13 posted and wondered about this. I aiso was her-2 positive. I know it is called a targeted therapy. Is it taken with chemo, or after ? It is uncomfortable reading this but when I was doing my chemo last June to Sept. they only did herceptin with advanced stages of bc. Just trying to understand this. Thank you.
grammy
Posted 5/9/2005 9:31 PM (GMT 0)
Grammy, here's a web site with information on the side effects of herceptin. Hope it is helpful to you. Lauri

http://www.breastcancer.org/herceptin_side_effects.html
Posted 5/10/2005 2:01 AM (GMT 0)
This may sound really stupid but I guess what I am trying to ask is, do they give herceptin after you have done chemo to help stop the cancer from coming back? or does this only work right after your treatment?
thanks,grammy
Posted 5/11/2005 12:44 PM (GMT 0)
I am no expert in Herceptin treatment, but I think that it used to be used for only Stage IV but is now being used earlier with great success. I'm sure it was only after regular chemo and radiation in earlier years, now I am not sure when it is given. I just know the tests and trials are finding that it is pretty effective. Big help???? Hugs MK
Posted 5/11/2005 3:17 PM (GMT 0)
No expert on herceptin either, Grammy. But, I think MK is right about it being used after regular chemo treatments. Hope someone will weigh in on this who knows for sure. Hugs, Lauri
Posted 5/11/2005 5:12 PM (GMT 0)

Hi Grammy! Herceptin is now being given 2 ways - either at the same time as the A/C or after the A/C cycle is completed. I was part of the clinical trial for the A/C-Hercpetin. I didn't receive the herceptin. I am not taking it because I had a recurrance 2 yrs ago. I don't have any info if they are giving this to women that have already completed the A/c and other drugs previous to these findings. I think that would be something your onco could answer.

It is a very easy chemo. It is given IV. Takes about 15-20 mins. if given weekly. Otherwise 90 mins 1x mo. The side effects are minimal. No real hair loss. Some loss of tastebuds and some fatigue. I was able to function normally when I was receiving the herceptin by itself. I believe that it must be one of the easier chemos. The one thing that has to be watched when receiving herceptin is your heart. The standard muga will keep track of this.

The govt just passed a ruling that it can now only be given on a weekly basis, instead of every 3 weeks. I believe that this deals with medicaid/medicare but you know that other insurance companies will prob follow.

Hope that this answers some of your questions....Deb

Posted 5/11/2005 9:30 PM (GMT 0)
Thank you all for the input, I was her2 3+++ which I know is not good my Dr. treated me with an aggressive chemo and I pray that was enough but if there is more that I should have done or could be doing, I want to know.
wouldn't you know I just had a three month check and all was clear so now if I want to talk to him I will have to call for another appt. I see my rads. Dr. in the early part of June but she would say see your onc. By the way how often do all of you see your onc. for three months, before it goes to 6 months?
I have to go my little two year old date is here.
Thanks for all the help.

Grammy
Posted 5/13/2005 12:56 AM (GMT 0)
Grammy-
I'am just now on my second AC treatment, and have been told I will be receiving the herceptin after the chemo every three weeks.Can I ask what kind of chemo you had?My pathology reports differed, and I just got clear ansewers so Im wondering what else may change as far as my chemo tx.I'am also her2+++.
Best wishes
Michelle
Posted 5/13/2005 2:11 AM (GMT 0)
Grammy-
One piece of advice, don't look back. They are constantly coming out with new research and new findings. If we all look back and wonder what would have happened if they did it that way, or worry that we did not do enough, we'll make ourselves crazy. You must believe that your doctors did everything they could for you at the time, and celebrate the new advances that may benefit others. I too may have been a candidate for herceptin. I forgot if it was 2+ or 3+, but my onc said it was "borderline" and that even stage IV would not get herceptin for it. But today, that may be treated differently. What I am trying to say is there will always be something coming out that we wish we had had, but can't turn back time. Ask the onc about it, but try not to let it bother you if they say it is too late.

As for onc appointments, the standard is 3 months for the first 2 years, then 6 months for the next 3 years. After that, annual. Some docs may alter that schedule and differ slightly, but in general, it should be similar.

Hugs,
Lori
Posted 5/13/2005 3:42 AM (GMT 0)

Grammy: I agree with what Lori said. You can't look back. If you do, you will never have any peace of mind. I know that it is hard but you have to keep the faith. If your counts are good right now and the tag tests are ok, then have faith that the treatments have worked. Once my treatments were completed, I saw my onco every 3 mos. She then told me I could come every 6 mos and then once a yr. I asked her if I could continue on the 3 mo check up as I felt better with that and she agreed. I think you need to speak with your onco and do what makes you feel the most comfortable.

Hugs...Deb

Posted 5/13/2005 10:54 PM (GMT 0)
Thank you all for the advice, how do I ever stop the worring my husband is getting upset with me and I know I need to move on but how. Any ideas?
Michelle,
I did dose dense AC and Taxol and then rads. I hope you are doing well with your treatment. I pray it goes easy for you. I would not have had such a bad time but was in the hospital twice and had 1 taxol treatment delayed because of my crohns.
Lori and Deb,
I know in my head that you are both right about not looking back but , sorry I always seem to throw the but in there. My husband says to get on with life and I thought thats what I had been doing. I worked through my chemo. My rads Dr. always tells me to know that I did all that I could do to see that it would not come back. Now I really want to add but what if. But I won't. My Onc. said the same about how often he would see me, I wonder if it was the same for everyone. He also said I could stay at 3 months if that made me more comfortable.
I have been making breast cancer bracelets, and I really find it helps I have sold almost 40 of them and everyone just loves them. I find some peace from it and have donated some of the money to help with breast cancer. I have given some as gifts to a few ladies that I know that just finished their treatments. One of the girls is my sister-in-law who found out right after I finished my rads. She is doing well and hers was found very early and that was a blessing. Thank you all for listening and for the good advice. I'm keeping the faith, every now and then I flip out and I guess this was that time.
Thank you all
grammy
Posted 5/13/2005 11:01 PM (GMT 0)
You know I forgot I am taking Armidex. I don't have any problems at all with it. I think of this as my coverage. I have alot of problems with hot flashes. Not taking the premarin has been hard but I keep a fan near by.
Thanks again
grammy
Posted 5/14/2005 1:31 AM (GMT 0)
Grammy, let me first offer you giant cyber hugs and then a big shout to say "You are normal!" IMO, you might tell your DH to back off, and tell him to "just get on with it" after going through what you went through. I guarantee he'd crumble. NO one can tell you how you should feel and I bet every one of us has been in your shoes. There is a big "let down" after treatment and a tremendous feeling of vulnerability sets in. That is the time we get scared, start second guessing ourselves and our docs and we may even cry a little. I was sure I had mets to bones, brain, liver and lungs within a year after tx ended, and I considered prophylactic mastectomies. (I did not really have mets). And I cried plenty when the fear got to me, and the feeling of "OMG, did I really have cancer?"

I think time is simply one of the best healers in relation to cancer. It will get easier, but it takes time. And you may have a step forward and 2 steps back, it is all ok. I think many here would agree that the first year after cancer is a very frightening time, and no one else understands. They act as if you had a bout of the flu, and you are done so just move on. They don't know how this impacted us and rocks our very core and influences everything we do going forward.

In due time, it will be easier and you will think less and less about it. I used to tell myself that my goal was to go a whole day and not once think of BC. THen I thought as long as I post on the internet, that won't happen....so I needed to reframe my goal. I changed it to more of an acceptance and peace, than to trying to ignore it. BC changes every one of us, and we have to find a new normal. It may be hard, but you'll get there.

And if you find that it is too overwhelming or the anxiety is interfering with your life, then it is time to talk to a doc or therapist about therapy or meds.

L&H,
Lori
Posted 5/14/2005 3:21 AM (GMT 0)

Grammy: Lori is so right. I personally felt the same way that you did my first year out of treatment. And a week or so before my check up with my onco, I was horrible to be around. Time does make it easier to accept and stop questioning. But each individual has to do it in her own time and her own way. There will always be days when you feel angry or just blue. No one else other than the sisterhood that we belong to can understand these feelings. Don't be afraid to cry. As for your husband, as Lori said, tell him to back off. Give you space and time. Is there anyone that you are close to that has had bc and gone thru treatments that you can talk with? This really helps. This week I decided that I was NOT going to have my treatment. I wanted to feel good for a week. Well, yesterday, I was a total b......! I don't know how my dd and granddaughters managed to stay in the same house with me. Anything anyone said set me off. I either screamed or cried. Today I am ok. So don't be hard on yourself. Treat yourself the way that you would treat a friend that was having these feelings. Don't hesitate to find a counselor.

Hang in there. We are here for you. Remember, each day will get a little better. Just love yourself.

Hugs....Deb

Posted 5/15/2005 1:00 AM (GMT 0)
Lori and Deb,
Thank you so much for the pep talk, my husband and I have been having a really hard time. In the beginning I told my husband that he couldn't cry with me, because I would not have been able to hold it together if he cryed in front of me. So he kept it together and I could not have done it without him. The poor guy on the off week from chemo I was in the hospital because of my crohns and would come out in time to have my next treatment. So we are trying to talk about all of this now. I do take zoloft and it does help but I never started taking it until I finished with rads. My kick butt mode was over and I started to fall a part. I have good days and bad days. I have four wonderful grandbabies, they melt my heart with just a smile.
I am going to hop up to the top and see if I can get to know the two of you. I hope and pray you all are doing well.
grammy
Posted 5/15/2005 11:32 AM (GMT 0)

Grammy: It sounds as though you have a wonderful husband but it also sounds like he is having some emotional problems since all of the treatments are completed. I am glad that the 2 of you are talking about this and sharing your feelings. I am sure that he has kept all of his bottled up and feels like he is about to explode. I belong to a local group that is starting a center of women/men that have been diagnosed with bc. I think of it as a "clearing house" where as much info as possible is available for them as well as a support mentor. The one thing that we are going to offer is counseling. Not only for the one with bc but for the spouse and for the children. You might consider finding out if there is a support group that 2 of you could go to together. Your ACS or the sw at your hospital or onco office should be able to provide you with this info.

Hang in there. It really does get a little easier each and every day. Remember, just one day at a time!

Hugs...Deb

Posted 5/15/2005 4:39 PM (GMT 0)
Deb,
Thank you so much. We are talking now. I just not sure if a group is what I need, there are so many stages of bc that I'm not sure I can hear all the details without that going to my head. Everyday is not wrapped around bc but it is there everyday. I thank you so much this has been such a help because I was wondering if I was the one that was stepping over the edge. I' glad these are all normal feelings. well at least for this anyway.
So how are things with you, do you still take the Tamoxifen. I live in Pa. Two beautiful daughters and four grandbabies and I have been married for almost 33 yrs. I turned 49 a few months ago.
Prayers for good days for you.
Donna
Posted 5/15/2005 8:33 PM (GMT 0)
Oh yes, the husbands and significant others are scared to death, too. It has been eight years for me and even if I groan or moan with age and some other health problems, my husband is right there worrying. As long as I keep quiet he stays back and pretends all is well. LOL. All IS well here. Your DH does need to be able to let off the steam and worries, too. Your Crohn's has to be a big worry for him as well. And those of us who are grandmas know about the special feelings we have about our grandchildren. Aren't they something? Hugs MK
Posted 5/15/2005 8:35 PM (GMT 0)
Hi Grammy-
Where in PA are you? Joyce is in the Philly area and we have a number of sisters in NJ.

Hang in there...
Lori
Posted 5/16/2005 1:08 AM (GMT 0)
Grammy- I'll re-post some info on Herceptin.... I was dx in 2001 with Stage IIB, her2neu 3+++, very agressive (possibly inflammatory) bc.

Herceptin has been around awhle, but only recently (1998) was approved by the FDA for use in metastatic breast cancer.... the trial that I had been in (and left) was being run by The Mayo Clinic, and I believe it was one of the largest ones, if not THE one they said they suspended because the results were so good....if you are her2neu positive your onc should absolutely, definitely already know about this drug! I had it in mid-2001 to mid-2002, and did NOT want to stop it, but my onc decided 1 year was adequate (it can produce heart problems). IF (KNOCK ON WOOD) mine ever comes back, I will definitely want to go back on it, and hopefully it would still have a positive effect. It is technically not a chemo, from what I understand. It's a mono-clonal antibody, which shuts down the overexpression of the her2neu protein and thus stops cancer cell growth. Thats why it does not have side effects like chemo (ie. nausea and hair loss). The one side effect is heart-related complications like weakening of the heart muscle, thus you have to have muga scans and/or echocardiagrams to make sure your heart is tolerating it ok. but if you do not take it with adriamycin, the heart problems are much less. Hope that makes sense.

hang in there, we're all here with you.

hugs- Stef
Posted 5/16/2005 1:31 AM (GMT 0)
Stef,
Thank you for all the info on the herceptin. I have been finished with chemo for 8 months, I have been reading all about how they are using Herceptin now and I was wondering if it could be used now but it really sounds like the time would have been after my chemo. It was just an idea, trying to make sure I covered all my bases. My onc. tryed to get me into a clinical trail but they would not take me because I did not have enough nodes removed. In the end it was for the best with the crohns. Thank you so much for the help. Everyone has been so kind.
Donna
Posted 5/16/2005 11:33 AM (GMT 0)
Donna- You're welcome.... have you tried www.clinicaltrials.org? I think that has searchable database, maybe you can find a clinical trial somewhere that you can join... from what I understand, you can join one no matter where it is, and have your local Dr.s monitor you and feed info back to the hospital running the trial.

stef
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