2nd Opinion regarding Herceptin

[Joannie]

Hi All:
I feel like I have been on this website a 100 times over the past week trying to figure out what is going on with Herceptin. I posted a couple of weeks ago regarding my status. I am almost 2 years out of chemo, received AC and Taxol, 8 treatments total. Had a 3.3cm tumor, er/pr - and Her2 3+. I had both breast removed. I saw my onc two weeks ago and she said Herceptin is only being recommend for those currently being diagnosed and those less than 6 months out from chemo. It seems that there are alot of us without recurrance, had no herceptin and we are waiting for answers. I'm going to get a 2nd opinion tomorrow at the James Cancer Center in Columbus, OH. My onc. didn't say she wouldn't give it to me, she just said it's not recommended. I'm trying to get my thoughts together on what to ask this onc. I'm looking for suggestions. Any ideas? You are all such a great help and thanks for all the wonderful posting/information you all provide. Maybe there is no answer for us yet, but I'm going to keep searching!
Thanks much!

[AlaskaAngel]

Hi Joannie,

I think those of us who completed chemo before Herceptin was commonly available for us (or at least was not offered or discussed by our oncologists) have been sitting here quietly waiting... waiting... waiting... under the impression that as a group we would also be openly discussed by those in the oncology profession who have treated us all.

It is becoming more obvious that no one is formally addressing this at this point, even though there are an awful lot of us out here. See my question posted earlier today.

AlaskaAngel

[PatS]

I finished chemo in Jan 2003 and am going to call my onc. again next week to see what she says. I talked to her about 3 weeks ago and she said she'd probably be willing to give it to me but wanted to see what was said at the conference. So, I'm hoping she'll still be agreeable and is she is that insurance will pay. One of my concerns was whether taking Herceptin now could cause a recurrence later on to be resistent to it. My onc. said there's no way of knowing since no studies have been done, and I figure the most important thing is to try to prevent a recurrence in the first place. I'm very grateful for the treatment that I was given and that was available to me but it just gets kind of frustrating some times....the dose dense protocol came out when I was in the middle of chemo already and then I didn't qualify for any herceptin trials and my onc. wouldn't give it off label. I'll be interested to hear what your 2nd opinion says.

Pat

[Lisa]

Many oncs are conservative and are hesitant to start/change treatment until the treatment has been out for a while. Obviously, Herceptin HAS been out, but only for women with recurrences. The part that throws me is her saying it's not being given for women more than 6 months out of chemo. That's news to me.

Love and light,

Lisa

[Bev]

My onc called and offered me herceptin just a couple of weeks ago. I finished chemo in February of 2003, so I'm two years out of treatment. I had a 1.3 cm tumor and one node positive. The onc believes that if herceptin reduces the chance of recurrance when given with chemo, it should also be effective after chemo has finished. I'm willing to take it because at this point I might have "micro" mets somewhere that cannot be detected yet. I believe that herceptin will give me a better chance of long-term survival. By the way, my insurance company has already agreed to pay for it, so they must believe there is a benefit also.

Bev

[Tuesday]

Hello,

I'm a new member, but have been reading this board quite a while.

I had bilateral mastectomies July, 2003, then chemo (I only remember Taxol and Adriamycin) and radiation. I am apparently free of distant mets, but, sheesh, the grade, advanced stage (III A or B, depending on who you ask - I say A), node involvement and extreme nastiness of these particular tumors suggest to anyone who knows anything about breast cancer that the chance of a reccurance is very good. Very, very good, actually.

Yesterday I called the onc who replaced mine and asked for Herceptin. To my shock, he said yes!

There are hurdles ahead (I'm on MediCal, California's Medicaid), but I'll deal with them as they pop up. Meanwhile, they've scheduled an ECHO to check heart function. There are other funding options, but I think I'll wait to see what MediCal will approve before stating phone calls.

I'd much rather face congestive heart failure (CHF) than metastatic breast cancer. I buried a 15-year-old son last June who died from CHF--due to Adriamycin therapy when he was 5--and I know it's easier to treat than met bc. (He died largely because he could not give up smoking pot, not even to get a new heart. I don't smoke pot, so I'm ahead of the game. <g>) Besides, even after my Adriamycin treatment, the chances of heart damage are not great.

I believe that this is a survival issue for me--although I don't exactly expect a reccurance, I wouldn't be the least bit surprised if it happened--so the fact that the wheels are turning has me really jazzed! If it reduces the chance of a reccurance even a little, I think it's worth any risk involved.

Thank you all for being there, being so knowledgeable, and forgiving any spelling mistakes. I look forward to getting to know you soon.

Tuesday

[Joannie]

Hi All:
I met with the onc. today regarding second opinion on Herceptin. There was obviously a lot of information coming out of ASCO this week. The low down, as I heard it:
If you take Herceptin WITH a taxane, there is an average of 52% reduction of recurrance. Huge number. If you take Herceptin iMMEDIATELY after chemo, you have a 13% reduction. It seems clear that the other chemo drugs are in someway enhancing the Herceptin??? Even with all the breakthroughs regarding Herceptin, there is still so much they don't know, especially for gals like us who never had the drug, no mets, but are HER2+ and more than 6 months out from last chemo. At any rate, she said considering my age (41), 1 node positive, 3.3 tumor size, she would recommend me taking the Herceptin. Two drawbacks:
possible heart damage
possible to build up resistence to Herceptin ~ if I were to need the drug for mets, may not work.
I feel like I left with more information, but I'm between a rock and a hard place.
Just wanted you all to know what I found out. This doc is involved in clinical trials at the James Cancer Center in Columbus, Oh (OSU). She is also a PHd. She was very up to date on all the news coming out of ASCO.
Now just trying to decide what to do. :-( Thanks for all of your inputs. I find much strength in this site.

[Cara]

I too am a Stage III a or b. (4 underarm nodes + ?2 chest wall)

I was diagnosed in February 2004 and started Taxotere and Herceptin.

Finished Taxotere in July and scan showed chest wall nodes had disappeared; underarm nodes had been removed by surgery.

Herceptin suspended during radiation (left side, so increased chance of heart damage)

Started Herceptin again in October and have been on it ever since.

I am afraid to stop as I believe it is keeping me mets free but am mostly afraid of developing resistance.
The heart problems, should they develop, are usually reversible once you stop taking Herceptin so I am less worried about that.

I do worry about other, as yet, unknown side-effects but have to weigh that up against the risk of developing mets which is high in my case.

My oncologist, who I see every two months, agrees with this assessment.

Last time we agreed to prolong it for another two months and hope she will have more information after the congress she is attending this month.

It is very stressful having to make this decision each time but I do realise that I would have been far worse off without the Herceptin.

[Barbara2]

My onc has agreed to give me Herceptin. Fiinished CEF chemo in March 03. Her 2 ++, FISH 8.7, ER+(slightly).

Yesterday I had the MUGA scan done, and had a port put in last week. Will see the onc next Tuesday and will start Herceptin, 52 weekly treatments. Still waiting to see if my insurance will pay but we believe it will.

I share similiar concerns as many of you who did not get the Herceptin during chemo: The benefits of Herceptin alone do not appear to be as great as when given with a chemo drug; getting Herceptin now may reduce its effectiveness if mets appear.

But I am willing to give it a try. It would be worse to have the mets return and then wonder if taking the Herceptin would have kept cancer away.

I sure appreciate this site and the information that can be found here. When we share what we learn from our oncologists, it is like we are getting many "second opinions" in regards to our questions. An of course the web addresses, etc that we find here that take us to the latest findings. Thank you, everyone.

Barbara2