Relapse HISTORY for her2+S

[penelope]

Robin those are exactly the panels that I was talking about. They are in fact grouped into hormonally positive and negative but not node positive or negative. For example these panels can represent all hormonally positive women and all hormonally negative women. Obviously a node negative, hormonally negative woman has different stats then a node positive, hormonally negative woman. But these panels do not differentiate this and there for the results are skewed no matter how you look at it. For node positive women, where node negative women have been added in, the stats represented here will be better. For node negative women, where node positive have been added in, the stats represented will be worse.

[atdec05]

Hi Robin

what I was saying is that the panel A for node neg women only shows 2 years for DFS; the panels for HR pos/neg show 5 years, so I thought the HR pos/neg panels might not include node neg women, since those women were added to the trial later than node pos women.

- anna

[Bev]

Thanks Robin. I'm encouraged. As I look at this, the number of nodes really make the biggest difference. Then if you are ER positive and do H, regardless of nodes, have a 90% survival rate. If you are both node neg and ER pos I would imagine survival rate would be 95% if doing Herceptin. I always wonder though what is it that makes people fall into the 5 or 10% that will relapse. Dumb luck I guess. BB

[Becky]

I think those that fall into any relapse rate may have other highly positive receptors that have not been discovered or aren't tested for yet (such as Her1 and 3). These, along with the p53 status and other things cause recurrence. Then, if you remember other threads, cancers can mutate over time (someone on the board did say that life finds a way - even life we want to die forever). So, my overall opinion is to do what you can do and that includes incorporating the findings of studies on lifestyle changes. Walking 3-5 hours per week has been shown to reduce the chance of recurrence by up to 41% (that's almost as good as Herceptin). Following a good diet, especially a low fat one (and watching what kind of fat you eat - balancing those Omega 3s and 6s) also shows a benefit of lowering recurrence risk by 21%. These things cannot be ignored - especially the walking which almost anyone can do.


It is futile to continue to worry that you (or I) will be the one who recurs. Most won't, a few will. I pray it won't be any of us (and like all of you, I am hoping it won't be me). Nonetheless, we should all go out and live a happy life because regardless, we are all working very hard to live and what's the point if it isn't happy and is rife with worry. Then all this would truly be pointless and we don't want that.

Smile all day

Becky

[CherylS]

Becky,

So well said that I think that we should end this thread with that as the final conclusion. Once again, thank you.

[RobinP]

Your welcome Bev. Glad I could help you! In general I think most people that are her2+ are also hormonal negative so I think that panel B and C which graph nodal category relapse are somewhat more reflective of the her2+s that are also hormonal negative. The general relapse for hormonal positives, in the later panels looks to be less than hormonal negatives but the long range relapse MAY be different. That's my two cents, what ever that's worth,- probably nothing...smile.

[AlaskaAngel]

(Sorry, Cheryl)...

I'm wholeheartedly supportive of what Becky spelled out... that we need to be very open to simpler, nonpharmacologic ways of improving our chances...

Yet... One reason I think the recurrence rates are worth discussing and dealing with is for those of us who are trying to decide whether to do more therapy or not.

In the case of those who so far have managed to stay NED and have been prevented by reasearchers from being included in the Herceptin trials, and who also were not ever treated with a taxane, I don't know of any information to help make the decision whether or not to do Herceptin or even newer treatments. Does anyone know of any helpful statistics?

Thanks,

AlaskaAngel

T1c ER+ PR+ HER2+++

[Mary Anne in TX]

I am finding that having breast cancer is a whole lot like having kids, getting married, having a goal, etc. - it changes as you get into it! I was so overwhelmed at first. Then I had to know "everything" there was to know! I am finding now that I'm so much happier if I spend less time on research and more time on life (to include good food, walking, time with friends, and fun, fun, fun). I do study all information I can find on line when I get new test results and make a list of questions to ask Dr. K when I see him each month! I know that I am lucky to have such great care at such a great facility in San Antonio.
Becky, thanks for your comments. It was a good reminder of how important my thinking is to the "why" of the battle!
mary anne

[Barbara2]

I agree, the topic of recurrance rates is worth looking into, especially for those who would like to find a trial or research of some sort that is looking at ways to prevent recurrances.

I took "late" herceptin, 26 months after finishing chemo, and never had a taxane. The more I read about how effective the taxanes are for her2+ breast cancer, the more I regret not insisting on it (I wanted it) which increases my desire to persue another type of therapy.

I think the only thing available to NED's is the vaccines. One is in Seattle and the other in Windber Pa. I also intend to enquire about the "Phase 1 Study of Her2/neu DNA Immunization for Patients with Metastatic or High-Risk Breast Cancer: a Phase I Study to Assess Safety and Immunogenicity" which is from the Sloan-Kettering Cancer Center in New York.

[AlaskaAngel]

Barbara,

When the first major announcement about Herceptin was made in 2005 I was sitting on the edge of my chair, waiting to hear any discussion about those of us considered to be at high enough risk to do chemotherapy, rads, and hormonal treatment, but who were prohibited from participating in the trial... and was shocked that there was no discussion at all about us -- as if we had all died or were of no consequence at all.

So I posted my confusion and anger here at that time, and raised the question as to whether we should try doing late Herceptin with a taxane because that showed greater success than Herceptin alone. When I asked my onc about that he said that the taxanes are primarily helpful to those who are HR-negative. You and I both appear to be HR+.

The encouragement for other possibilities is helpful. Thank you for your post.

AlaskaAngel

[RobinP]

Thanks AA. You hit the very crux of why I posted the history of her2+ relapse to begin with. Sometimes now, I regret having posted it since it generated such frustration for some. I really didn't mean to do that. I only presented this post to inform others who would benefit from the information in order to make wise treatment choices. Those who specifically MAY benefit are those in the following category:


Those who are considering late adjuvant Herceptin who did not initially get it.

Those who had very little Her2+ disease, less than 1cm and node negative, and are currently not given clear indication to do adjuvant Herceptin upon initial diagnosis. This post may help them to do it or not.

Those who wish to do further treatment with Her2vaccine. Yes, I know of at least one stage 3 on these boards that has done more treatment with the vaccine.

PS. Sorry AA, I do not have those statistics you are looking for. It seems the researchers have forgotten about those who did not fit the criteria that were made in their clinical trials, like you and those with very minimal her2+ disease.

[vickie h]

I Have been on Herceptin since Feb 04, since my initial diag. of her 2 III+, ER- PR-, 7 cm. left breast MRM July 04, Taxotere, carbo, taxol, now Navelbine all with herceptin. July 05 to July 06 no chemo, only Avastin and Herceptin (both hard on the heart). PET scan July 06 shows cancer now in nodes at paratracheal region, neck, and right hilar region. No mets to anywhere else. I am 4 months away from the 3 year mark. I think that none of these "stats" take into account lifestyle changes, stress factors, just plain different physiology from one person to the next. My Onc seems to believe that none of us is ever "cancer free". That it stays at manageable levels so tiny that we are not "cured" but stable. And I can live with that. It makes me take alot more responsibility for the way I live, love, pray, and the kindness I show those around me. I am grateful to be alive today, after being given such a poor prognosis at the beginning.
It would be wonderful to survive to 5 years and I will strive for that and even more, but I am taking each day at a time, filling my heart with compassion and love and listening to the songs around me. Thank you for all the support I have gleaned from each of you beautiful souls. We are all sisters within and I thank God for meeting each and everyone of you this way. Have a great Sunday and step outside and look at the moon tonight, it is shining down on us all. Much love, Vickie H

[CherylS]

Sorry guys,

I didn't say what I meant to say very well above. I agree completely with you all, that staying on top of every bit of wisdom we can is so important. I just meant to applaud Becky's great attitude toward life, trying to enjoy each day as the gift it is and trying not to be consumed with the fears and worries that this disease brings us. Keep this great discussion going!

[CherylS]

P.S. - You all notice I keep checking in on this post. If it can be worried about I will worry!

[AlaskaAngel]

Thanks, Robin! I do think that as hard as it sometimes can be to share and try to understand different points of view and very complicated information, that is one of the more important reasons for this place to exist.

Cheryl, I think so too and appreciate Becky's abilities to handle both the scientific and the emotional sides of sharing the vast piles of information to try to separate out what is helpful and what isn't... And as exciting as progress is, it must be hard to keep up with it all even for those doing the research...

A.A.

[kat in the delta]

Just looked at this--Thanks for the info.I like the Facts and the Details and no cover-ups, and am glad someone had some statistics.!!! ..I have been trying to find something. I have finished my 1 yr of Herceptin after getting the A/C, rads and taxol with 1/2 of my taxols with herceptin right after my Onc. came from a meeting about using it for early stagers, then the other half alone + 1 yr of herceptin.
I have felt like a sitting duck after stopping herceptin eventho' it may not have worked for me. Also, for the past few weeks my upper right chestwall has been really hurting me at the site of my masc.& lymph node removal. I have even taken pain meds for it. Sometimes I feel like my chest is on FIRE !!! My Onc. says that this is normal..--???-(I don't think so)
Has anyone here experienced a burning pain at the site of surgery and nearby regions ? rsvp kat in the delta

[julierene]

If you look at my history below, you will see that there will always be those women... I got BC very young at 28 (as well as my mother at 28) because we have a genetic mutation in the p53 gene. There is new info out about a drug called advexin (i think) and they are hoping that will help with the p53 pathway. For a woman who fell in the 11% category, I have often wondered how many other pathways there are. So much for node negative and small tumor size!

[gin-tx]

Dear Sarah,

I too was diagnosed Her 2, second episode of BC, first 10 yrs ago. Don' t know all the details of the tumor but need to find out more when I see my onc in two weeks. I too am on Herceptin/Aridia (for bones) and Femora. So far it appears to be working okay, am having CT to see if tumor that was on my spine is gone from 18 treatments of radiation (that had to be dealt with first, malignant) and a mammogram next month. Let me know how you continue to do on the Herceptin. I've only had 5 treatments with no side effects except very tired.

hugs,

ginkott1@aol.com

[SusanV]

Just asked my onc today about taxol....with herceptin. His response was that there is minimal value for er+'s like myself......

Alaska Angel had posted this same info...just wanted to give you what my onc said today !

Love to All

[Bev]

Hi Susan V, I think I would get a second opinion. Panel F shows recurrence at 5 years at 10% with T & H. 30% without. My doc said the absolute reduction in risk after doing tamox, rads etc for Herceptin is 5%. My doc recommended doing it, The only difference in pathology between me and you is 1.6cm. You're younger and high grade. I think I would push for some Herceptin.

Thanks all for your posts. I know the graphs are just numbers but I like having them. The discussion makes everything so much easier to understand.