Patient-centered HER2 bc project

AlaskaAngel · 11-14-2007, 11:19 AM

Over the holiday, as part of the thread "Breast Cancer", there was discussion about the possibility of HER2 patients working together to help organize the collection of relevant information about us in a way that hopefully would speed up research developments:

http://her2support.org/vbulletin/sho...41183#poststop

I thought I would start a thread more specifically about that, because the topic is sort of lost in the discussion about my friend's death. Thanks, Lani, for opening the door to the possibility for us to work together as a group if there are others here who are willing.

As a side note, I also want to mention the following clinical trial, which is for those who have not yet had bc but is interesting in that it is attempting to form a similar kind of registry and gather information about people who are at high risk for bc:

http://www.clinicaltrials.gov/ct/gui...55503?order=13

Joanne S · 11-14-2007, 07:36 PM

Just as I have started a poll to find out how many of our HER2 sisters were on antidepressants prior to their BC diagnosis, I would be more than happy to participate any way I can.

In response to the post about the possibility of donating BC tissues, the idea sounds good, but I'm not sure if the details have been worked out yet, if has been well thought out and organized, as well as the funds, researchers, locations, etc to overtake something of this magnitute for such extremely beneficial research.

At this point, I personally hope I don't have any cancer cells to donate now!

StephN · 11-15-2007, 05:21 AM

Dear AA -
Was out of the loop with my own grieving when this discussion took place. Let's see where we can go with getting someone interested in using our blood or tissue. Maybe this idea can be taken to San Antonio in a month and some interest drummed up there.??

Terribly sorry about your friend and "our" BC sister losing her life to this durned disease.

The trial you gave the link to is at Georgetown, a long way from most of us. Here is a bit from it for those who may know anyone in that vicinity who fits this description:

This is a registry for patients who have a risk-reduction mastectomy ("prophylactic mastectomy") due to being at high risk for developing breast cancer, followed by breast reconstruction. Eligible patients include those who have a breast cancer-related gene, a strong family history of breast cancer, or a personal history of high-risk conditions such as cancer in the other breast or ductal carcinoma in situ (DCIS). Patients are enrolled in the registry before surgery, and are followed for up to ten years afterwards

Joanne S · 11-15-2007, 07:37 AM

Thanks so much for the clarification StephN.

AA, Looks like you'll have to delete or remove my 'Yes' from your poll results. My masectomies were performed to remove existing cancer. In other words, I didn't have a prophylactic mastectomy to prevent or lessen the risk of getting cancer. I would think that all or the majority of the ladies on this site did not have prophylactic mastectomies.

AlaskaAngel · 11-15-2007, 11:43 AM

Hi StephN and JoanneS -- and others,

StephN, you have ESP -- I was thinking exactly that -- that if someone who will be at SABCS is interested in such a project perhaps discussion among the bright minds who are attending that function would be really helpful in moving forward with it. Thanks too, for your thoughts about me and my friend...

JoanneS - I think maybe I confused things by putting in the second link. It is only for those interested in being part of a prophylactic registry and I added it only as a representative example to show that some groups with concerns about bc are starting to get their act together and create their own registry. Your vote shouldn't be subtracted from the poll, as the poll is not intended to apply to a prophylactic registry but instead to one that our group might be interested in helping to start. Thanks for your post about this, because by putting in that extra link I might have confused others too!

AlaskaAngel

suzan w · 11-19-2007, 07:40 AM

Hi AA! This is a great idea...do you have any ideas of how to proceed??!!! Let me know if I can be of any help!!!

Andrea Barnett Budin · 11-19-2007, 02:00 PM

I noted your post AA and wanted to get back to you on it as I was midst whatever. So now I voted YES! and it said I have already voted in this poll. Maybe. I surely thought about it, but thought I wanted to post a comment rooting you on or the like, so I waited. Or did I? Sorry. It can get very confusing in there (my head). Too much info coming in from too many directions. I am on overload.

In summary: If I already said YES -- GREAT. If I didn't
-- I AM SAYING YES NOW...

Andi

Lani · 11-24-2007, 06:13 AM

benefit if tiny bits of tumor specimens were submitted (don't know about the paperwork involved, but could ask)

It involves what looks to be perhaps a prime suspect in her2+ breast cancer, especially in those with a family history, FoxP3. It is a tumor suppressor gene located on the X chromosome, which means it only takes one mutation to cause cancer (with X chromosomes, only one X chromosome is active at any one time, the other being inactivated normally). THE INTERESTING thing here is that it may be possible to reactivate the inactivated X chromosome, thus restoring the tumor suppressor function, by reversing the body's normal mechanisms responsible for X inactivation--a potential C-U-R-E.

This may sound very esoteric and far from clinical relevance timewise, but I think it may hold they key to discovering the cause of her2 + breast cancer AND providing a genetic test and potential genetic fix so that this research may not only lead to treatment for those with her2+ breast cancer but also genetic testing and treatment for their daughters.

I am not a geneticist and my last exposure to research in human genetics was during two quarters as a graduate student back over 30 years ago.

I have corresponded with the researcher who provided the samples which allowed this team to produce their original article on FoxP3 and, if any of you are interested, would correspond with him again to see if voluntarily provided her2+ tumor samples would help this research proceed expeditiously.

I believe he has previously obtained samples from China and Vietnam for research as much less paperwork is involved.

Here are the Pub Med ID numbers of the relevant articles:

PMID: 17570480

PMID: 17604714

PMID: 18034612

PMID: 18008005

As I review the literature and attend lectures and conferences, I will continue to look for opportunities to offer samples to researchers
doing research which appears to be breaking ground in her2+ breast cancer
with findings promising potential treatments (hopefully in the short term) and understanding of the disease with potential prevention.

StephN · 11-24-2007, 12:11 PM

Very intersting information, Lani.

Wonder if they would need new, fresh tissue or if preserved parafin blocks of tissue would work. Several of us board members got our tissue blocks after Sheila came back from San Antonio last year and suggested we could do that.

I would give a block if it would help, tho don't think my family history is close enough to me, as a few times removed.

Mine is kept cool and dry in styro pak and metal box.

Andrea Barnett Budin · 11-24-2007, 03:49 PM

Thanks Lani,

Sorry to be obtuse but how do I access the above ID #s? Regardless, thanks for staying on top of this potentially rich source of bc HER2 research for us all. I know where my block is, or assume still is, since '98, when last I located it for HER2 testing. If as Steph says, old preserved tissue is acceptable for research -- I would be delighted to share a bit of myself...

My paternal Grandmother and her daughter, my Aunt, had bc. Aunt died 30 yrs later of ephysema (w/mastec and radiation) back in the dark ages. I believe both were like me -- post menopausal.

Andi

Andi

Lani · 11-24-2007, 07:52 PM

google "Entrez PubMed"

Then enter the PMID number eg 17570480 into the empty rectangle (great computer lingo, eh?) where you usually type the topic or the author. You will get the abstract with the possibility of getting the full article if it is open access. If you go to search on this site and Search FoxP3 you will get what I have already posted.

Hope this helps.

AlaskaAngel · 12-02-2007, 09:19 AM

I think this might be more broadly helpful to us all, especially if those attending the San Antonio breast cancer meeting could seek ways to connect us with investigating it:

"We would launch a massive effort to expand the currect tumor registry concept to a level previously unknown. The goal would be to enlist hundreds of thousands of patients with all tumor types to participate in a huge prospective data-gathering effort. This initiative would include a translational bank of tumor blocks and sear that would be linked to a clinical database comprising electronic medical records and information provided by patients themselves, as discussed on this program by Lee Schwartzberg from the West clinic in Memphis. Lee and his extraordinary network of about 500 community-based oncologists gather all types of valuable information from their patients utilizing a simple hand-held, touch-screen computer tablet, and using the same device, they are also able to deliver back educational activiteis and videos.

My vision would be to employ this innovative technology across the country, in hundreds of oncology offices and cancer centers, to gather data on what patients are eating, how they are exercising, whether they are using supplements and alternative nutraceuticals and to cross-reference these and other data with tumor endpoints and outcomes. Then I would invite my brainy bunch in Los Alamos to masticate this outpouring of information and come up with testable hypotheses as to how to interevene in cancer progression.

- Neil Love, MD, October ResearchToPractice.com, October 29, 2007."

Lani · 12-03-2007, 11:12 AM

in a country which keeps more health stats on its citizens (one with national health care)-they already have the mechanisms to do so--where people are easier to follow because they move less (less immigration, emigration, loss to followup), such as a Scandinavian country.

Here is a study based on stats of over 1.5 million women!!!:

http://www.breastcancersource.com/br...93_0_0_0.aspx?

Joan M · 12-10-2007, 07:21 PM

AA,

Such polls can also be used to educate the public about breast cancer in general and HER2 in particular.

The board represents a good size sample of women and some men who can vote from experience. And there may be media agencies interested in polls that the public may be interested in and that can take complex scientific information and simplify it.

For example, one of my co-workers who is an IBC survivor and is known to this board started a BC group in New England. A few years ago, she was interviewed for local television and then that broadcast was picked up by many television stations. It was a great way to get out the word about IBC.

A poll could ask, for example, questions about women and lifestyle changes due to breast cancer. For example, what percentage of woman on this board (which is a good sample) work full-time even though they have advanced breast cancer? How many work part-time? What percentage of woman on this board need to work for medical insurance? What was the average age of woman on this board when they were first diagnosed with breast cancer, early stage or otherwise. What percentage of woman have had medical claims denied related to breast cancer treatment? What percentage of woman have switched oncologists at least once. How many woman elected to have a mactectomy? How many elected a lumectomy?

Other polls could be more scientific in nature.

It would be nice to develop a poll that asks about 12 to 15 questions.

Just an idea, and easier said than done.

Lani · 12-17-2007, 04:02 AM

I went among the poster presenters and speakers at SABCS with the unspoken mandate to search among them to find those who represent the best hope of fulfilling the wishes of those who participate and/or just lurch on this site who are willing to donate serum, part of their surgical specimen and the right to have others access their medical records (with privacy maintained, of course) for the greater good ie, to have these researchers utilize the information gathered to further the understanding of the causes of, behavior of, and best treatment for her2+ breast cancer.

I took the mandate I believed I had very seriously and sought out those who had published the best research and those whom I felt were presenting useful information, were associated with researchers worthy of reslpect and those who , in conversation regarding their posters (or in once case, another researchers' posters) demonstrated a passion to provide clinically useful progress in furthering understanding in an extraordinary way and/or providing in the near term something useful respect to help deciding between treatments or the treatments themselves for her2+ breast cancer.

I came up with four such persons. I will post this as its own thread and under the original thread by Alaska Angel in which I suggested this as a way to honor those we have lost as well as benefit all.

I explained to these researchers that I could not promise to deliver these samples, but that over the almost three years I have provided information to this site that I sensed there were a large number of those whom I would, rightly or wrongly, expect to be women (and men) of action and not just words. I hope you prove me right! I will be adding more over the next few days and weeks as to how we can turn this from a nice idea into a powerful
tool. All the researchers were extremely intrigued by the opportunity to have not just the large numbers of specimens this site could potentially make available but also the medical histories/records that go along with them. Here in the US that has been made exceedingly difficult by the medical privacy laws referred to as HiPAA that were passed under Clinton and have been a bane to medical researchers ever since.

My personal favorite among the researchers was the one responsible for that wonderful paper wherein her2+ breast cancer (actually a cell line which is her2+ER+ called BT474 when purposefully utilized to cause breast cancer in mice) could be CURED, yes CURED, by a combination of pertuzumab, herceptin and Iressa (when I asked one of the authors at the AACR breast cancer meeting in San Diego in October why it was felt that it was not necessary to add estrogen deprivation or tamoxifen to cure the disease in this one instance, his answer was that it was postulated that blocking the four her family members' pathways simultaneously was so effective SO QUICKLY that there was insufficient time for the tumor to mutate (or another minor clone to become dominant).

In view of the views of Max Wicha, presented at last week's SABCS that her2 is responsible for enriching the number of stem cells within any one tumor, supported by Jenny Chang's paper in which she showed via a neoadjuvant lapatinib trial that neoadjuvant lapatinib caused a decrease in the stem cell content of a her2+ tumor (in humans, not mice!--she has not yet done the same experiment with neoadjuvant herceptin) it looks like her2 neu is the leading beacon pointing the way to making progress in breast cancer in a way that may benefit research into ALL CANCERS.

I did not speak with Jenny Chang, but she is at the same institution as the "favorite paper author" I apoke of above and will be sharing this information (possible availability of numerous her2+ breast cancer tumor specimens with matched medical histories and possibility of serum samples) with her institution (Baylor) and her colleagues.

Once I get unpacked I will provide more information on those I felt were worthy of winning this lottery. There may have been others, but these
seemed to take the cake.

Now it is up to all of you (including those in the UK, Europe, etc, as I found one researcher from London) to put your pathology where your mouths are ( a variation of the English phrase "to put one's money where one's mouth is", which refers to actually acting on one's word, not just maklng promises).

One is part of the problem if one is not part of the solution.

I informed all researchers that I am participating incognito and wish to remain that way. If others, such as Cynthia (with her legal background), Rhonda H (with her no-nonsense proactive approach and generosity) or others wish to come forward and help with the logistics of all this, it would
help speed this from a nice idea toward fruition into a reality.

Comments?

AlaskaAngel · 12-17-2007, 08:59 PM

Hi everybody. Sorry for the belated response. I may not have picked the best day to shovel snow and mush off for a day in town...

Lani, thank you for your enthusiasm and efforts to further explore the possibility for a registry while at SABCS. As StephN mentioned elsewhere, attending is both exciting and exhausting. I'm looking forward to hearing whatever all of those who spent time and energy to attend have to say. Collecting what everyone saw and heard and then sharing it here and debating different viewpoints to evaluate the most workable possibilities will take a while. Others have organized registries elsewhere, and I think there IS very real interest here in organizing a registry that would provide the biggest bang for the benefit of sample contributors over the longest time.

Thanks to all who attended SABCS, and for any additional discussion about the concept of carefully establishing a reputable registry.

AlaskaAngel<O</O<O

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Bev · 12-17-2007, 09:33 PM

Would definately donate serum and it. I understand they hold onto it for 5 years? Thanks Lani, this sounds exciting tho I know it could take years to fruition.BB

Andrea Barnett Budin · 12-18-2007, 11:24 AM

BEV, THIS IS DISTRESSING. My tissue samples (from '95 and '98) are gone? Inaccessible? Destroyed? I was unaware of the 5 yr holding rule. Is that in every state? With every institution?

Information I cannot personally ever benefit from nor so many others -- lost... I had no idea.

Lolly · 12-18-2007, 04:51 PM

Andrea, it varies, I belive depending on the institution which in turn uses state mandates as a guideline. Here in Oregon, the mandate is 10 years to hold tissue samples in a bank, but the hospital where my original bc slides are stored keeps them for 20 years. I found this out by calling their pathology department last year; you could easily find out the status of your samples by calling the doctor who did your surgery to find out what institution he sent your slides to, then call that pathology dept.

<3 Lolly

Lolly · 12-18-2007, 04:58 PM

I see from Flori's post you've already tracked down your tissue samples, just a question of finding out how keep track of them for later use. My question is can we store them at home?
It seems to me there was a discussion about this some time ago. Could someone refresh my memory?
<3 Lolly