Breast cancer recurs in almost one in four patients....

I appreciate what Claire wrote and it does not matter to me what forum it is in as long as it goes with the conversation at the time. 

purple, I do not know the best WAY to present this stats: "the average survival of recurrent bc is less than 2 years" (from the original linked article, describing an slightly aged statistic that is probably just a couple years off the current norm).    If there is a more palatable/acceptable way to present this aweful stat, I'll be curious to learn it.

If facts could not move you to action, that the plight of 40000 US women dying every year do not sway your emotion from full enjoyment of your charmed life,  then, I really have nothing to say."

jenrio

I was not referring to the original post. I was replying directly to AA and her post.

My <personal> action is a choice, and a slim one at that . I am moved to act , but possibly not as YOU might choose. If it makes you feel at all better, I can tell you that I am not fully enjoying a  charmed life.

I have cancer , remember ?

purple,

I know the conversations will wander at times, and the one that wandered had some very valuable discussion in it.

Take a look back a few days. After several posts that went off topic on page 3 on June 15, I politely indicated the subject this forum is about. When the same person continued to be completely off track, I asked a fair question.

Progress doesn't often happen without people who are willing to put the time and effort into discussing and planning and then actually participating in organized and effort, such as a commitment to actively participating in better and better clinical trials. It is sad to see so many people with a history of breast cancer so easily side-tracked again and again from helping with that objective -- and thus dumping the chances for anyone who is interested in participating to have a meaningful conversation about it.

I would love to hear about all the efforts that any of the many posters in that discussion have made to be part of the solution in helping others through research and clinical trials.

AA, as you pointed out, "this is a forum about clinical trials, research news, and study results." And this particular thread is about a specific study that indicated that 1 in 4 breast cancer patients will have a recurrence.  As I see it, many of the women posting here are stating their reaction to that study and explaining their approach to life given the uncertainty that is associated with a 1 in 4 risk of recurrence.  The posts that you are objecting to seem to be perfectly on topic to me.  Most are positive and helpful... and that's a good thing, right?

You and jenrio want this discussion to be about individual participation in clinical trials. That's an interesting and important topic but as LtotheK pointed out, that's not what the original post in this thread was about. Perhaps you should start a thread about participation in clinical trials. And if you do, please keep in mind that while it's great whenever someone participates in a clinical trial, it is unfair to put that burden on everyone and to imply that those who are not participating in clinical trials are selfishly off living their happy lives with no consideration to those who will be diagnosed with BC in the future. You have no idea what is going on in other people's lives or the problems they may have physically or emotionally as a result of their diagnosis and treatment or what other things they may be doing to advance BC research or to help women with BC. Or maybe they were simply not eligible for any of the clinical trials that were in recruitment at the time they were diagnosed and going through treatment. You shouldn't judge or chastise someone based only on the end result (i.e. someone not participating in a clinical trial) when you have no idea what factors led to that end result.

Beesie, the voice of reason, as usual. Thanks.

Mary 

The day of my BMX I turned up early to have my arms measured for a lymphedema study.  When I first saw my MO I asked if any research was available to participate in but she only found studies for stage IV.  As for offering my tissue, I didn't know it was preserved.  I thought they only kept slides, but I'll ask next time I see my MO.  I'd be worried about donating it all as maybe in the future they could test for some factor which wasn't tested at the time.  Ki67, androgen receptors, yet to be found factors that might be receptive to a future vaccine to prevent progression.

I think those who visit the clinical trials and research pages regularly have shown they care very much about research and the plight of their stage IV sisters.

Jenrio, I appreciate all your research information and calls for more to participate and realise you don't mean to suggest anyone should feel guilty or risk their own health to help.  And for those who are past the stage where they can help, let's all enjoy life to the fullest and make the most of what we have.

I can only speak for myself, but, yes, I would be really scared to participate in a trial for a new drug, because I am scared of what the standard of care did to me and its long term detrimental effects I'm going to have to deal with for the rest of my life.  I personally do not have the physical, psychological capacities to deal with more SEs than I'm having to put up with right now. Hopefully, it can only get better.  At the present time, I'm being followed by 10 specialists on a 3 to 6 month basis, I just cannot deal with more

Now, if there were clinical trials for prevention with natural substances, i.e. dim, grape seed extract, etc. in my neck of the woods, I would fight with my nails to get in.  Hopefully, this will come, but not a day too soon

It comes down to personal choice and belief system.

Hi all,

I've been lurking here for a few days.  I don't know how I feel about participating in a clinical trial. I'm not against it and actually might in the future. But like others, I feel as though my life has been under siege since last August.  I just finished rads a month ago, have a mammogram and ultra sound of both breasts (dense breasts: after pointing out to my MO that the FDA recommends US for women such as us, she ordered an US) and a baseline pelvic US scan scheduled tomorrow.  To be quite honest, I've never been so hyper-focused on my body as I have been the past nearly 10 months now.  And I'm SICK of it, frankly.  BC has turned me into a hypochondriac. I was never this way before. I fed it well, exercised it well, kept my weight below 20% on the BMI scale, gave it lots of intellectual stimulation, and it worked GREAT. Till I was dx.

I don't know HOW I feel right now...and I don't know how I feel about thinking about more hyper-focus on my body through a clinical trial, being monitored by strangers, asked how I'm feeling, ad nauseam.   Like many others, I do not live in a metro area and had to drive two hours RT for each infusion, rad tx, and doctor appt.  Until I know how I feel about all this, since I'm still processing it, I don't feel like taking on anything else BC related.

My hat is off to those of you who can and will participate in a clinical trial.  But right now, I need a bit of a break from it all. I still have a bmx and recon waiting out there for me, so I'm not even completely done with tx yet.

I don't see myself as a Titanic passenger: Only 38% of them survived. --

Claire in AZ

Thanks everyone for getting the conversation on a productive track.   Some misc about clinical trials:

1.  Most people's tumor sample is banked for 10 years and after that it's discarded

2.  If a patient has recurrence before 10 years.  Depending on how soon they relapse, the patient should get retested on the new site if possible.    There are CTC trials that allows blood draw and typing the CTCs.   

3.  Depending on your types of tumor, rarity of tumor type, other conditions (diabetes, autoimmune disease, HIV, IBC etc),  you could be 1/10000, the dream tumor of some researcher somewhere.   Contact NCI.

4.  a lot of the most effective cancer poisons we have come from natural substances.   Adriamycin comes from soil bacteria;  metformin from french lilac;  taxol from tree bark;   eribulin from sea sponge.

If I'm on titanic, I'll not insist an all-natural recyclable handmade lifeboat for everyone.  Drugs are drugs.  Even the most effective cancer killing drugs need to be tweaked (chemically) and made more effective by figuring out the best nontoxic way to deliver the drug to target cancer.   Science and progress requires experimenting, tweaking, and clinical trials on patients.   These are NOT dirty words.   "Natural" is a marketing word, it's a dirty word if it is not tested by unbiased science.

5.   Traditional clinical trials especially on early stagers require long time commitment (like 5 years) from patients.    So traditionally late stagers are the main force of clinical trials.   Unfortunately late stagers are few (50000/year), the ones with the right subtype of BC rarer (5000/year for TNBC for example),  the ones with good performance statuses are fewer still (2000/year), the ones with good performance statuses living near a research facility are rarer yet (say 1000/year), the ones with good performance status who are willing to serve in clinical trials are still fewer(I don't know how many, but certainly less than 50% from my observation),  and so it's hard to recruit enough of them to test new drugs.   End result is:  traditional clinical trial process takes 15 years and 1 billion dollars for any good drug to make through.

This is why I'm so excited by ispy-2.org.   Newly dxed early stagers needs to commit only months to either control or experimental arm.   Basically a couple of dose to see if it (standard chemo or standard+new drugs) works, if not, they change chemo or go ahead to surgery.   The new drugs are generally the most promising drug that has already been tested for safety.     200k/year newly dxed patients with good performance status could potentially be recruited which means quick recruitment.    A new drug if demonstrating efficacy, could go from bench to approval in as little as 5 years.    Even FDA is excited.

If Henry Ford is on Titanic, he would not say: let's do a handmade lifeboat for everyone.   He'd make an assembly line that churns out lifeboats.    Ispy2 is the kind of assembly line for new cancer drugs that he'd be proud of.

6.  This site has a break up of death rate for different classes of passengers on titanic.   It's a bit of off-track: 

http://www.anesi.com/titanic.htm

I understand everyone has their own problems and priorities.   I'd not drive 2 hours to a hospital for a clinical trial chemo either.    

But the fact is, most if not all middle stagers have benefited from past clinical trials and research, which gave us a first/second class seat on Titanic, with higher probabilities of survival.

So back to my Cato bit: If we do not support research and clinical trials and spread the word for ispy-2, in whatever way we feel comfortable in, then I do not know who would.     

Hi Claire, until these trials become more widespread, logistics is a huge barrier for me  I recall that I was approached by the onco nurse to participate in a trial re benefits of exercise at my dx, but never received the call from the local university.  I just remembered two years later, now that the subject has come up .....

God only knows what I would be willing to do should I recur though.  I would not have had any objections to adjuvant chemo before surgery or immune therapy in a trial setting but the onco never mentioned any such thing.  Although I may have participated in a "trial" without knowing when I was given Tamox prior and during rads which may not have been the standard of care at the time....

I now realize thanks to this thread that it's really up to us to stay apprised of any such developments

ETA, hey, knowing what I know now, I'd go back in a heartbeat and say NO to TAC (yew tree, bacteria, molds, mustard gas) anything but !! 

At one point, severe SEs need to take the front seat and weighed much more carefully against the 'possible benefits' any drug may or may not have - adjuvant chemo before surgery is one step in the right direction, but risky at best.

In my particular case, I was administered extremely potent chemo when it has been demonstrated that luminal A BC does not respond to chemo, no matter how potent.  

Did I not participate in a 'trial' without my knowing ? 

CP, I don't recall, do you mean the exercise one, I may have signed something, but don't remember. Re Tamox prior and during rads, it came down to my onco's call at that point...but I remember reading that it was not the standard of care at that time, it was being debated.  I would not object at all to Jen's #2 and 3 points of course

I don't mean to confuse anyone by editing my post above as opposed to responding in a new post  

Kira,

What is the name of the other trial?  Is it one of these?

http://clinicaltrials.gov/ct2/results?term=cryoablation+breast+cancer

Pretty interesting.   Maybe I should write a post summarizing some interesting pre-operative breast cancer trials and post it on "not diagnosed but worried" and "newly diagnosed" forums.   Could everyone pitch in and make that thread particularly active or ask Moderator to pin it?

http://community.breastcancer.org/forum/5/topic/789977

I was interested in going into the metformin trial, but with skipping rads etc ... I decided I was not a good candidate to chance 5 yrs of placebo.

Having said that, I am now on the metformin through my endo dr. and will post all of SEs and my own results online .  I KNOW it's not at all the same as a clinical trial, but I do hope it helps someone ...incl myself of course.  I am more that willing to share info.

jenrio, Yes that was the trial. I was so sorry I wasn't able to be part of the trial , but sure would love to see others have the opportunity.What a great idea you have. I know my BS was very active in many trials, but I'm not so sure all are. I will definitely visit such a thread often to keep it active.

Here is a link to one clinical trial testing DIM

http://www.cancer.gov/clinicaltrials/search/view?cdrid=703752&version=HealthProfessional