Very Late Herceptin for early stage

[RobinP]

I am almost a 4 year survivor of a4mm her2+++ bc, node negative by traditional standards but 1 sentinel node had a micromet. Was treated with masectomy and CMF for 6months.


About a year ago, I asked 3 leading breast oncologists at major cancer centers about Herceptin trails. All said I was too early stage for the trail and wouldn't give me Herceptin or the vaccine trail, stating that the cardiac risks were too high.I slso saw my breast oncologist in Aug of this year and he still discouraged me from Herceptin for the same reasons.

However, I never knew the HERA trail interm results from this past spring until yesterday when I read the New England Journal of Medicine's review of Herceptin after Adjuvant Chemo. Now I am thinking with my 7% risk of relapse, that it could be cut in half with only perhaps .5 CV risk. I am thinking about demanding Herceptin despite my warnings not to do related to cardiac risks. Of course, I am 4 years out which makes the decision a little hard as even some of the PIs of the HERA study don't know what to recommend with late Herceptin.

Just curious if anyone else is as far as 3-4 years out and is doing herceptin late?

Thanks in advance for the input!!!!!!!!!!!

Robin

[RobinP]

Hi,

Just curious if anyone out there has gotten Herceptin for very early stage disease, my inivasive was only 4mm of her2+ with no nodal involvement by traditioinal standards- had 1 sentinel node with micromets.

My breast oncologists are telling me no Herceptin due to that fact that I am not only 4 year NED but wouldn't even meet the criteria set for the HERA trail due to the small tumor under 1cm and node negative status by traditional standards.

Anybody done Herceptin in a similar situation. As I feel determined to find an oncol who will consent to do the Herceptin late for me.

Robin

[Becky]

Robin


Where are you located (as far as trying to find an onco who might work with you)?

Best regards

Becky

[panicked911]

I am receiving herceptain - early stage 1 no nodes and no vascular involvement - I did not do chemo and the onc in NY said it Herceptain was a "no brainer" for a young otherwise healthy woman who is Her2+++.

Hope this helps

[RobinP]

Thansk for the messages above. I live in upstate NY and still looking for an oncol to consent to give me Herceptin. I am waiting for many return oncologist phone calls at this moment on this very topic.

Robin

[Valerie]

Hi Robin,
I just started herceptin 2 weeks ago. I was diagnosed in Feb 04. I had a lumpectomy (4 mm tumor) , no nodes and am weakly estrogen + and pr indeterminate. In August, a year after I had finished my four rounds of AC my oncologist told me that I would have been given herceptin if I had been diagnosed and coming through their practice this year. It took me a couple months to digest this and then reading the results of the studies I went back and asked for herceptin. I know there are lots of women in the same situation, a year or several years out from initial diagnosis and now finding out that herceptin might prevent recurrence. Tough decision! I just decided it was worth the risk of heart problems. An ounce of prevention is worth a pound of cure so to speak. Go with your gut feeling. The first herceptin was ok for me, not at all draining like chemo. I hope you find an oncologist who will listen to what you need. Valerie

[jhandley]

Hi Robin
I was 4.5 years out when I asked for a core biopsy of my always lumpy but lately more so left breast. First lump was 2 cm 1 node+; Chemo= Adriamycin, taxotere and CMF (taxotere trial). This time nothing showed on ultrasound, a couple of tiny microcalc. on mammo. ...anyway 4 x 2 cm tumour her2+++ and one spot on liver. So I am now on taxol + herceptin and have my fourth treatment on Monday.If I was you I would have very thorough scans at this stage; you just never know what may be there but symptomless and even it is very small it will save you the worry of "should I /shouldnt I" re. the herceptin. Re. the concern of heart damage read the posts on this site re. Q10 and the prevention of this.

Cheers
Jackie

I have a question about scans, and I'm hoping some of you could help by offering your opinion. My doctors (primary oncologist, and others I see for consultation just to get other opinions) all seem to think it's unnecessary to scan unless you're having symptoms. Reading posts like the previous one makes me think I should insist on some kind of scan. So my question is what scan should I ask for? Is there one that would cover everything? I know I obviously need to talk with my doctors about this, but I'd like to be prepared. If I'm pushing for a scan, I want to make sure I ask for the best one.

[Becky]

If you are going to ask for the "preliminary" basic scans, ask for:


CT scan of chest, abdomen and pelvis

Bone scan

These are the basics to go for.

Warm regards

Becky

[AlaskaAngel]

The bone scan looks at bones for hot spots (which include things like arthritis) and the CT looks at all tissues in "slices". There may be differing philosophies among us about what to use if you do not have symptoms and particularly if you are NED. So I hope that it is understood that we may disagree with each other without animosity and only in providing food for thought.

The CT uses much more radiation than mammograms and so I believe it should be reserved for use for those with symptoms. The bone scan only looks at the bones and it is hard to distinguish other things like arthritis from cancer with the bone scan.

If you are HER2-positive and NED and symptom-free it would be my inclination to USE that to your advantage, and investigate the Bayer serum test or any others like it, along with breast cancer markers like the CA 15-3 or CA 28.29 plus other blood tests like your alk-phos and your ALT and AST (SGOT, SGPT) first before going to imaging. Imaging will still be there as an option if you are not satisfied by those test results.

AlaskaAngel

[PatS]

Hi Robin -

If you can find a thread titled "late herceptin" you'll find responses to a similar question I posted in eather Sept. or Oct. I think several women here are starting Herceptin after being out of treatment for 1+ years. I was diag. Stage 3 in 07/2002 and ending treatment in Jan. 2003 and am also considering starting Herceptin. Most oncs seem to say since there's no scientific evidence to prove it will help they can't recommend doing it if you're more the 1 year out of chemo, although some are still willing to give it. Right now, I'm waiting to see if my insurance will pay for it and will make my decision from there, My onc. doesn't think it will help (no scientific evidence, etc. etc.) and isn't too thrilled about my pressing the issue (I think she thinks I crazy ) but said if it something I need to do to be at peace and the insurance will cover it she'll do it. I did email the researchers from the HERA trial to see if they had any insight, and there reply was

"In the HERA trial, the maximum interval from the end of chemotherapy to the start of Herceptin treatment was 320 days. Therefore, it is really difficult for us to recommend the start of Herceptin treatment beyond this interval. On the other hand, we don't have any data indicating that the administration of Herceptin after longer intervals would be of no benefit."


Take Care,
Pat

[RobinP]

Thanks Pat,

I am really upset at the medical community that they have not personally addressed the late Herceptin for individuals like us. Seems to me we are missing out on something that could benefit us.

I am going to see my local oncol next Wed. about this issue and seeking to get Herceptin late still. I'm just angry that my oncologist at Dana Farber never told me about the HERA trail results when I saw him in Aug, especially when I spoke about the need for Herceptin once again. Unfortunately, I did not hear about the HERA trail results until just the other day. I feel left in the dark and pissed.

Robin

[RobinP]

The more I think of the 50% increase in DFS in the HERA study group, the more I want Herceptin, even if it is late in starting. This is particularly true with the lower response to Herceptin in the metastatic setting. I hope my oncol. will consent to it when I see him next week. I will let you folks know. I am also anxious to see if they address late Herceptin at the San Anton. breast conference. Well, we'll see.

Robin P.

[Ginger]

Does anyone know of a Cleve area Oncologist who might prescribe Herceptin for someone 2 years out? I would like to change ONCs and would like to find one who will at least consider Herceptin as an option for me. Stage IIA node neg ER+. Thanks for all the great info on this site !

Hey RobinP,

Just wanted to say that the folks at the Farber are notoriously conservative about herceptin use--I know this from experience a few years ago with my partner Rachel (we're in Cambridge).

Drop me a line (melnick@babson.edu) and I can suggest some other folks in the Boston area who might be easier to work with...

Jeff

[bjj]

Just wanted to say that I know how you feel.

I am in the UK. I had WLE in January, tumour 1.6 cm, ER+, clear lymph nodes, and have recently found out that I am probably HER2+++ (still waiting for confirmation as have two different test results!).

I was advised in Feb not to have chemo just radiotherapy which at the time I was happy with. However I now feel I have missed out. I saw two oncologists last week both said that because I was low risk I didn't have chemo etc etc. It seems that at the moment in this country you cannot have Herceptin without having had chemo, I can't have chemo now because it is too late, and I can't have Herceptin alone and they both said that there was no data about what (if any) benefit there would be to having treatment so far down the line.

I have accepted at the moment that I had the right treatment at the time with the information available but I very strongly feel that the in the future the treatment options for people like me will be different. I feel that anyone diagnosed HER2 positive will be offered chemo and Herceptin as a matter of course (France are doing this). I just got diagnosed too early - as did you, I guess Robyn. It's hard, isn't it?

My onc is going to the San Antonio conference and knows that I am anxious and hopes to come back with an update. I think she knows me well enough now that I will be following it too!

Take care

bjj

[CLTann]

Hi,


For those of you who have been disease free for four years, you really are in very good situation. Those adjuvant therapies, regardless which one you opted, are aimed to kill the stray cancer cells which may have migrated to other areas. In general, four years are more than sufficient time to have incubated the metastasis from these stray cells. Therefore, if nothing happened for four years, you are basically cured. Good maintenance diet including flaxseed, fish oil, exercise (to make yourself strong), should allow your body to fight off any new intruders. As you probably know, everyone is encountering daily new threat of cancer cells. It is up to your own immune system to take care of the daily threat. Therefore, to get into Herceptin after four years of disease free is an unnecessary cardiac risk. Most strong medicine carries with them risks and unreversible damages.

Ann

[RobinP]

Bjj,
In this country, you would have been given chemotherapy initially at diagnosis with any IDC over 1cm. Your risk of relapse would have been lower if you had done so. Given the fact that you want treatment now, there is no reason why it should not be considered by your oncologist. If I were you I would look for someone willing to treat you now before you are further out in treatments. Good luck with your pursuits be tenacious!

Fondly,Robin

[RobinP]

CLTANN,

Thank you for your response. I know that Christine, Joe's wife, had a relapse of a small her2+ that was only just over 1cm after 9 years of DFS. Obviously, breast cancer is not a disease that is considered cured after 4 years, particularly her2+ breast cancer. Yes, it is more likely to relapse sooner; however, that does not preclude it from relapseing later, as in Christine's case. Also, my oncologist's sister relapsed with her+ breast cancer for a 1-2 cm breast cancer after 11 years of DFS.

Yes, I agree that you must keep your immmune system in top notch shape with an excellent diet etc. to help fight any disease. However, no matter how healthy you are, HER+ breast cancer can and has relapsed in healthy individuals. Therefore, it must be treated appropriately. Herceptin is very specific treatment for a very specific type of cancer HER2+. Herceptin has been proven to increase DFS in early stage her2+ bc patients as evident in the HERA trail. Later, treatment with Herceptin in the metastatic population is less effective at only 25%. Therefore, early treatment with Herceptin is appropriate in the adjuvant setting and should be considered after adjuvant treatment prior to a relapse as suggested by the PI of the HER trail, Edith Perez.

According to Larry Norton, a leading breast oncologist at the pestigious Memorial Sloan Kettering, Herceptin after adjuvant treatment is appropriate and has little cardic toxicity. Cardiac function should be monitored while on Herceptin. Yes, it would be nice if we had a lot of very data on the side effects of Herceptin. But we don't. However, we do know we could relapse at anytime with cancer. So what prevents us from trying to delay that uncertain relapse when the evidential risk of cardiac damage is minimal at least in the short run and apparently even longer as evident by the use of long term Herceptin in the metastatic population. Anyway, I suppect that the cardiac damage will be much less in the adjuvant setting than the metastatic setting as Herceptin is used more frequently and longer in the later.

[Ginger]

Could somebody tell me - What is DFS? Thank you.