patient centered her2+ breast cancer research--PLEASE VOLUNTEER to donate your tumor

[Lani]

Only a small core would be necessary. There is a possibility one project involves a small blood sample and all projects would involve your signing away to the researcher access to your medical history/records.

How about making history by accelerating the progress into research into her2+ breast cancer by light-years by giving promising researchers on the brink of gaining true insights into her2+ breast cancer much larger amounts of specimens to study than they could ever hope to (as they are limited to studying those samples generated at their own institution only or those generated by a clinical trial only). They have troubles even studying those at their own medical institution as not all continued to have their care at that insititution and also, even within those treated at their institution, they cannot access the medical records to see how those patients did with or without treatment, and which treatments, as medical privacy protection laws passed during the Clinton administration (HIPAA) prevent them from being able to access that information!

I am too tired to post the four names and what research they are engaged in at the moment (plus it is fun to raise expectations and anticipation!), but I will give you an enticing amount of information to figure out who one of them is, an let you know that I found one in London for those whose specimens lie in the UK or EU.

Here is what I have already posted about it:


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?

[SoCalGal]

Lani,
You write: "I am too tired to post the four names and what research they are engaged in at the moment (plus it is fun to raise expectations and anticipation!), but I will give you an enticing amount of information to figure out who one of them is, an let you know that I found one in London for those whose specimens lie in the UK or EU. "

What do you mean by this post -especially the comment in red? Many are too ill and too overwhelmed to go on a Where's Waldo expedition. It does take a great deal to coordinate the logistics of "giving" our tumors to the right places, along with releases and blood work BUT I'm sure we would all cooperate if we knew specifically what and how to do it. If you want to spear head something like it it's your choice. If you want to coordinate a team, or want support from us I'm sure you'll get it. Like you said, perhaps some of the woman here who are physically able to move this forward can band together and do so. We are people of action.

I know I'm in a chemo fog BUT, this wording is very troubling to me. -Flori

[Lani]

poster sessions, etc during my 5 days in San Antonio and my flight was delayed and I had 8 minutes to transfer from one flight to the other with my luggage not making it onto the plane with me. My luggage was delivered at 3 am, hence my posting in the wee hours.

It will take me to unpack the bags, find my notes, before even thinking of posting the names(with the exception of the author of my "favorite paper"...In my tiredness I mused that this was sort of like a singing, dancing or beauty contest, where half the fun is in the anticipation of finding out who one. The author of my favorite paper was the only one who felt she first had to check with her institution as to how it best be done and who encouraged me to find out how many of you are activist "warriors" rather than sheep who find it more comfortable to follow. (Nothing wrong with sheep, in fact I am very fond of them!)

Nevertheless, I have been disappointed to see yours as the only reply to my thread so far. I see this project as of monumental importance if the her2support group steps up to the bat and
participates fully. It would be groundbreaking and pioneering if it were to come to fruition.

Five days away from home has left much undone. And I will be more useful to the task once I have rested.

A few "thanks for your efforts in talking to all these people" and "please, please end the anticipation and let us know who these researchers may be so we can get this project on its way" would have gone a long way. But the morning is still young...

[StephN]

Dear Lani -
We have not forgotten your "mission" in San Antonio. In my case I am just trying to digest ALL the new information that has been posted here in the past week, as well as waiting for you to get unpacked and find your information.

As one who as attended the San Antonio symposium twice, I totally understand how the high energy and constant presentations can affect one's ability to keep every last detail straight. Personally, I have never experienced such an intense energy level as felt at that symposium.

It is like people's brains are bouncing off one another. There is important and stimulating conversation at every turn. Information overload is very easy to attain, and you went the extra mile to seek out presenters and researchers that might want to leap ahead with HER2 research.

THANKS!

[SoCalGal]

Okay- fair enough - then I apologize.

Lani, I think that many people feel gratitude for your efforts. The "please, please end the anticipation..." is too abstract - your post is not as crystal clear to the board as it is to you. I am pretty bright and resourceful so I feel that if I don't know how to move it forward or how to respond, or interpret, or what to do next, then most also won't know. Don't forget that many here are chemo'd out, greatly fatigued, fighting depression, etc. I don't know if you've ever done chemo, but I'm guessing that if you haven't you've witnessed it firsthand. You seem to do a lot of traveling and sure have the brain power with regard to research and ideas - you are lucky for that intense level of focus. We are also lucky that you post here. Remaining anonymous works against you. Not a judgement, just an observation. It keeps people at bay. People on this board "get naked" with one another. We have nothing to fear and nothing to lose. We already have cancer, how much worse could things be if we really "knew" one another?

People respond best when there is something very tangible and specific asked of them. Even something as important as this project involves "marketing". I think we need a small group of people who can work on this together to make it a reality. These woman would respond if it was more clear what needed to be done. Maybe a conference call to see what's realistic and how we can make "it" happen. Lani, even as I type this I am just exhausted but I would help to coordinate your efforts or do what you thought would be helpful.

After you are home from S.A. perhaps some personal emails to the few people that you think could move it forward would be good. Then we can use the board to give specifics. I don't know how to use the information and run with it but I think that you might know. Hope you have a good day today. Say hi to Joe, Christine and Brenda if you see them. --Flori

[Sheila]

Lani
Its too bad you didn't take the time to stop by our booth and meet each of us that went to San Antonio....we are quite a team! As last year, the information is exhausting and overwhelming but so worth it.

[hutchibk]

Sheila - I am betting that she did stop by our booth - but we didn't know it. I believe she is hoping to retain her "incognito" status.

Flori and all - I think I tuned in to much of the info that Lani is talking about at SABCS, and I too wait with baited breath for her distillation of the very powerful developments and research regarding HER2. There are some very elegant researchers working on breaking the code of our particular subset of the disease. There was so much that I found to be over the moon optimistic about, but I have no idea how to translate it accurately. All I know is that I heard two researchers use the phrase "on path to potential cure" and I know that they didn't say it lightly. Those are strong words to use in such a setting. But they are breaking the complex code and network of HER1, 2, 3, 4 and the synergy and escape hatches that those genes/proteins have heretofore used to proliferate. There are some very smart theories out there and we as patients in the immediate might be able to offer something that can contribute greatly to advancing those theories. It would be generous of us to give Lani a moment to catch her breath to congeal the info she acquired, so that she can present it to us in an understandable way. For her to be there acting on our behalf so directly with the researchers is a generousity that I can hardly wrap my mind around... All I can think to say is, THANK YOU Lani. (I actually smiled at her attempt at ironic humor due to her exhaustion. I knew exactly what she meant... that she knew it might be a little cruel to have only the energy to post a small taster of the info she acquired, for those of us waiting with baited breath - but she was excited and wanted everyone to know that there is much to be excited about and that she has every intention to post the nitty gritty details at her very earliest opportunity. It was not malicious, just a stab at gently irony.)

[Lani]

Dr. Rachel Schiff of Baylor has worked with Dr. C. Kent Osborne and Graciela Arpino and their team have published much of the original work on AIs working better than tamoxifen for those who are ER+ but PR-, as well as work on the second, faster acting estrogen receptor which sits on the cytoplasmic membrane rather than inside the nucleus and crosstalks with her2 as well as the wonderful study on CURING her2 breast cancer in mice using the triple cocktail of pertuzumab, herceptin and IRESSA (an oral tyrosine kinase inhibitor against EGFR aka her1). Dr. Osborne presented a very elegant talk on how the her family (1,2,3 and 4) and their ligands(the compounds which attach to the receptors and activate them) and ER and IGFR and others crosstalk and how tamoxifen, estrogen depletion (AIs) and others combine with her family inhibitors and how attacking 3 to 4 pathways simultaneously appears to exhaust the cancer's means of escape (I liken cancer to a puppy that wants to go outside and play.. you can shut the front door, but it will find the back door, the door to the garage, and perhaps the playroom door to escape out of if you don't close them all...hopefully the puppy tuckers out and gives up after checking out 3 or 4!) Also at her institution, Baylor, is Jenny Chang whose paper was the last given yesterday. Max Wicha, stem cell theory of breast cancer advocate par excellence, discussed how ER was not on the stem cell but rather on the progenitor cell (can explain this later in more detail--remind me!) and how the role of her2 was to turn a switch which caused there to be a higher percentage of stem cells within the tumor. This was born out by Dr. Chang's neoadjuvant study in which she gave patients lapatinib only after an initial biopsy that showed her2+ breast cancer. After the lapatinib she took a second biopsy and after that, gave chemo and herceptin and a third biopsy.

The second biopsy showed a decreased percentage of cancer stem cells than the first (wish she had done another study with herceptin only first, and then lapatinib with chemo and another with just herceptin then lapatinib, lapatinib and then herceptin and a third with both together...oh well!)

These cancer stem cells are felt to be the only ones within the tumor capable of making cancer recur and to hide out like mildew in your shower after you use bleach containing cleaner...because they are dormant and hide in the form of their protective spore, in the case of mildew, or in their
hidden niche in bone marrow, brain, etc and multiply only rarely, like life in the desert which blooms only after the very rare rains...they are not killed by treatments which rely on the cell dividing to kill them (virtually all chemos). Dr. Wicha has formed a company with Dr. Clarke, the discoverer of the breast cancer stem cell and within the last 10 days it got an enormous infusion of funding from GlaxoSmithKlein according to the Wall Street Journal.

So whether or not you personally believe in the stem cell theory of breast cancer, this institution (Baylor) has researchers at the very pinnacle of her2+ breast cancer research--there are already drugs in development which target stem cell markers and these triple cocktails seem according to most of the leading cancer researchers to be the best hope of taming the beast(please forgive me for comparing it to a puppy, I don't want to insult puppies, just to show that it is very determined and used to getting its own way!) Some drugs which are already FDA approved may turn out to work.

If you can access the Wall Street Journal there is a great article about patients trying to "mix their own cocktails" to cure their/or their children's cancers(not something that I am advocating).

Dr. Schiff did not want to commit herself to do anything but check into what institutional paperwork and protocols might apply until I could assure her that we truly had dedicated patients who intended to fulfil their promise to
provide their specimens( usually $70 to provide much more than they need, so hopefully less and perhaps we can get a grant) and histories (usually just takes a faxed copy of your signature to the department of medical records allowing them to obtain your mammos/xrays/mris and or their reports, lab tests, operative reports, clinic notes, etc.)

I will see if a pre-med I know would like to take this up...would look great on a resume and will check with my local breast cancer advocate organisation to see if they have any volunteers. But there is no point in going further if the samples and medical records releases are not going to materialize.

Perhaps Alaska Angel or Rhonda could start a thread asking who would give a small piece of their surgical specimens, any additional blood requested (if we can get the costs deferred and get it drawn locally), any additional swabbing of the mouth (who knows, they might ask for it) for genetic
material for testing, and who would be willing to give them access (privacy maintained) to your medical records. Something with a colorful graph for yes, no vs maybe might do the trick!

I think it would be a great memorial to those we have lost, an affirmation of hope for those still alive and an effort to prevent our daughters from having this burden hanging over them as well. I personally believe we are much closer to curing her2+ breast cancer than many other cancers which afflict so many. Our understanding of it is growing by leaps and bounds but it can be turbo-accelerated by providing the researchers with enough samples with matching histories to maximize their ability to sift through the various
directions the research is going and point it full-steam ahead in the right direction to benefit all as quickly as possible. A side effect may be to find cures for other cancers with similar behaviors (eg some esophageal cancers express her2).

Am still searching for the card of my second candidate, someone looking into the immunological aspect of her2+ breast cancer, but in the meantime I will provide you with the names of the London researcher and a researcher
in Alabama, who works with some present and past Stanford researchers.

The former is Aleksandra Filipovic, Imperial College London, UK. I will be calling and emailing her to get her to describe her research to you. The latter is Robert Seitz of Applied Genomics of Huntsville, Alabama and I will
have him provide a description of his research and how he would utilize the specimens and medical histories. I would prefer to provide our samples to
nonprofit entities such as universities (he works with university researchers), but as I recall his firm might be able to provide many here with information on their specific tumors, whether immunohistochemical or by gene expression profiling. This might help in the short term those deciding whether their tumor is more likely to respond to one targetted therapy or another. Again, I only had short conversations with the two above (vs Dr. Schiff with whom I have spoken, emailed previously) so I would like for them to further "sell themselves" to those who might wish to donate their specimens.

If you search the abstracts at SABCS you should be able to find that with Robert Seitz's name on it...

Got to get going...more later!

[Lani]

http://online.wsj.com/article/SB119759308934528357.html?mod=home_health_right

[Leslie's sister]

Lani:

You are really the first person I think of when I think of someone that informed and willing to take the time to share their knowledge with us. I can NEVER thank you enough for ALL that you do. Please post more specific information about what and how to help you. Once I have specifics I can take them to my sister.

Please know Lani that I really, truly appreciate you!

Lisa

[Lani]

doing and how your specimens can help. I want their proposals in their own words so that those here who may volunteer their specimens/histories understand the research goals and perhaps can decide which if any of these project they want to contribute their tissues to. These emails must be worded in a diplomatic fashion.

As you know, people always wonder what kind of personal gain is behind
an offer of this kind...sort of sad in a country with a long history of volunteerism. That is why it was so worthwhile personally approaching these people face-to-face so that each could appreciate the others veracity, motivations and humanity.

I am now unpacking to find the card of the 4th researcher (the one interested in the immune system's role in her2+ breast cancer) as well as the posters of the Alabama researcher and the immune researcher so I can place the links here so you can get a taste of what these people have already done. I hope they will provide me with a list of what they hope to do. The researcher from London was not a speaker or poster presenter... we happened to be looking at the poster of the gentleman from Alabama during the period I was discussing the possibility of providing samples/histories

I will also be eagerly awaiting their email replies to see how eloquent they can be in presenting their research goals.

[Lani]

although some of the authors are from a for profit organization, others are from Roswell Park Cancer Institute, a highly respected institution and perhaps that is the way to go???

http://www.abstracts2view.com/sabcs/view.php?nu=SABCS07L_750

[AlaskaAngel]

Lani,

I think we share a passion for figuring out the best way to set something up for a registry, and have one question to start with that maybe you can help to answer. I would prefer to e-mail you or PM you but that access is not available.

However, first I would like to provide some information to help demonstrate my commitment to such a project. As part of the clinical trial process, at mostly my own expense I have been donating blood samples every 3-4 months for several years now for research. The purpose is to find better markers; the blood is used to find better markers for both breast cancer and ovarian cancer. As part of this investigation, my medical records are open to the researchers who use my blood samples.

Completely separate from that clinical trial process, I was accepted for another trial that is sponsored by one of the pharmaceutical companies and offered via a large number of reputable researchers around the world, which in addition to blood sampling required tumor sampling. This trial also provided access to my medical records. For various reasons I have not participated in this trial, but the collection of the samples and information about me was provided for analysis to those conducting the trial.

Is this mass of raw, pre-trial information about the participating HER2's entirely already freely available to the many researchers responsible around the world? Or is it typically restricted to direct analysis only by the pharmaceutical company staff, and kept by the pharmaceutical company?

AlaskaAngel

[Lani]

I never doubted your commitment to this project-when I suggested it you "scooped it up and adopted it" with a passion

I was hoping to

1) get from Joe the number of registered "users" vs psters vs some idea of the number of lurkers if it is possible to determine those. to provide to those
insititutions/researchers we are approaching


2)get an idea of how many would come forward and agree to provide the specimens and history.

Many months/years ago I asked theoretically how many would agree if their treating physician would do a bone marrow biopsy to determine if it could determine whether the treatment they had had was sucessful (as an alternative to neoadjuvant therapy for those whose tumors were too small for that or who were not treated that way ie, surgeon did not consider that before doing the surgery and THEN referring them to an oncologist who would have considered treating them that way). Those treated with neoadjuvant therapy get to see whether the treatment they received worked (at least initially, no guarantees that resisitance did not develop later or that some cells remained dormant and unaffected to reappear later --putative cancer stem cells)and try another if it did not vs those whose treatment occurred after the tumor had been removed, who just had to hope the treatment picked was the right one and "wait for something to happen" whether fracture, bone pain or signs/symptoms of liver, brain or lung metastases.

Studies from Germany have shown that certain markers on isolated tumor cells found in sampled bone marrow of those in Stages I,II, nd III are excellent predictors of those with poor prognosis whose treatment should be the most agressive and probably whose treatment should be the most targetted as these are very very very slowly dividing cells than chemotherapy affects the least.

Graphs of those with her2+ tumor cells in their bone marrow or uPai/uPar
on their cells are among those with the worst prognosis, according to these researchers (put Pantel K into PubMed or Google and look at related articles in PubMed as well). These tests are commercially available.


I DID NOT suggest bone marrow sampling as part of THIS REGISTRY project as it involves a surgical procedure (although a small one--with the first done under anaesthesia at the time of initial surgery to determine a baseline ie if they are there from the start,and another one at the end of treatment) although I think it would be an important study to do on larger numbers of patients. Hopefully they will do it in Germany where there is government sponsored/assisted health insurance to pay for the procedure and where there doctors seem more inclined to suggest it . Most researchers I have asked about this seem to
think patients wouldn't agree to it. but I am not sure if it is the patients or their own preferences (it is one of few invasive procedures they do and perhaps they don't like to) which direct their view.

(Perhaps Madubois could chime in on this as she is probably one of few here who has had this procedure and could present her opinion in an informed way.)

A few on the board at that time (when I asked how many theoretically would consider having their bone marrows sampled) thought it sounded like a good idea and theoretically thought they might.



Even though the bone marrow sampling question was something I personally have wondered about, as I tend to be a believer in the stem cell theory of breast cancer, I knew I was
trying to represent those here in honoring those they had lost and creating hope for themselves and their daughters by offering the registry and looked to talk to those most likely to the type of research with it they might have wanted.


Therefore,THIS TIME THE IDEA was MORE PRACTICAL--NO ADDITIONAL INVASIVE PROCEDURE required unless one wanted to give blood samples.


Now a day and a half after returning from SABCS , and with a bit more perspective...and not as many responses as I would have liked-- I am tendiing to rethink the original plan.

Perhaps we could make a repository of the tissue donated at one or two institutions--one in the US and one in the UK or other EU country--and allow them to subdivide the treasure and serve as a lending library.



With a bit more rest and reflection I now realize that on my last two visits to SABCS I have met someone who could really help me with this. He was a representative of an organization which provides samples for researchers. He was from the Department of Pathology at Washington University in Saint Louis. I had not thought to ask someone, even theoretically, what institutions/mechanics are already in place for such things before starting off on my "matchmakers" quest with the poster presenters/speakers.

As I am truly a fish out of water dealing with -- I should have followed my usual inclination which is to "do an apprenticeship" by approaching others who do something similar and learning from them first.

Looks like I have lots of homework. Still working on those emails, working to find the card of the immunological researcher, and now getting in touch with this person at Washington University.

Try to be patient, but in the meantime I would appreciate if those like Alaska Angel who pledge they REALLY WOULD (rather than theoretically would like to think they would) provide their tumor samples and history (and those who would be willng to provide addditional blood samples or mouth swabs as well come forward and declare yourselves and or post your misgivings and under what conditions you would consider participating.

I would appreciate if others would look into the logistics/paperwork required from a legal point of view (?Cynthia)m from the point of view of those on this board, as Baylor will probably come up with their own paperwork and someone must determine if its wording is in the best interest of those contributing and perhaps if any funding might be forthcoming (?Joe). I originally proposed this project when Alaska lost a dear friend as a living memorial, and I followed through to try to give birth to this registry. But I think others should come forward to "deliver" it and help it through its infancy.

I am not qualified medically, scientifically or legally to remain in charge of this project so I would appreciate others signing up to help "adopt the baby and help rear it through its infancy and childhood" Hopefully it will last a long time and we find others tol have to deal with its teenage years!

If we can't find the will to have this baby, let's throw the baby out with the bathwater early so I can move on to other things.

I won't send more than cursory emails to the researchers until I feel more assured this baby is not about to be aborted.

[madubois63]

I certainly didn't expect to see my name mentioned when I started reading this post. I haven't even had my tea yet.

I don't think people have replied because this is a lot of information to take in at a time when most are too harried to think so seriously. I am still healing from my latest surgery and trying to shop, wrap, bake and do all the normal things I didn't get to do over the last two weeks. I am sure I am not the only busy person around here. Anyway...

As to the bone marrow biopsy, they hurt! I have had 5 or 6. I try to block them out of my memory. Would I do another for reseach? Absolutely! I have had several done by several different doctors. If we could all have them done by my Sylvia (Nurse Practitioner), we'd all be in good hands. If they were all done by my leukemia onc, I'd say run...

I am all for research - even if it doesn't help me at all. I have a daughter, a son and 2 nephews I do not want to ever see sick! I have had an unmarked van come to my house and collect blood (gov't), I've signed over my medical records for research twice (Inflammatory and leukemia), gave over my original pathology slides, filled out tons of surveys and just last week gave two big vials of blood and signed over my medical records again for new research.

In my opinion, the best way to get a larger number of people to participate is to have this done through thier oncologists office while other tests are already being done. Maybe a packet could be put together and taken to your onc during an already scheduled appointment. Last weeks blood donation for research was done while I was already accessed for my normal blood tests. My original slides are 8 years old, but are still stored at my cancer hospital. I'm not sure about how long they save the bone marrow biopsies, but I am sure mine can still be obtained if needed. The cost of something like this could be astrimnomical, but if previous tests can be used, I am sure it would save a lot of time, money and hassle.

[madubois63]

Lani - Like I said, I still haven't even had my morning tea...Have you participated in other research programs? Maybe trying a few out will help get the info you need. I re-read your post and remembered doing the swabs of the cheek a few years back. I am sure I have copies of the info packets for at least two of the different research programs I participated in. I will look for them. Write me personally with your address, and I will make copies and send them to you if you'd like.

[Margerie]

When I was qualifying for the vaccine trial at UW, they fed ex'ed a packet for me to take to my onc appointment. At the appointment, they did a blood draw (due for labs anyway) and the nurse followed the directions in the packet (a form and vials to be filled) and then fed exed it back to the UW lab. That was easy.

I have my tumor slides at home. Is this sufficient for a tumor sample?

[Joe]

I had posted this as a reply to another post..

I wish that you had spoken to me in San Antonio as I have been discussing a similar project for several months. I could have introduced you to others who recognize the collection of tissue and serum samples will provide a great deal of data which may lead to the eradication of HER positive cancer. There is also another reason why 2008 would be an opportune time to launce such a project.

As you are well aware, research projects require a great deal of funding and planning, both of which are beyond our scope and financing. I would have no problem with members launching such an initiative and will also offer to construct and host a website for that purpose.

You on the other hand would have to formally construct a study plan to submit along with Grant requests as such an project would require hundreds of thousands of dollars. There is ample funding available through Avon, Komen, Armstrong and other entities.

California has a great program which would partially fund such a study and the State of Texas has recently authorized a cancer research program.

The HER2 Support Group currently holds a very unique status with cancer researchers and enjoys an exceptional reputation. We would act as the sponsoring organization.

A first step might be to host a conference call with all interested parties.

Regards
Joe
<!-- / message --><!-- sig -->

[SoCalGal]

I just started w/a new onc and will discuss the project at my next visit. She is a woman of power and action - perhaps she'll have an idea on logistics.

After the first of the year I will have more time and hopefully feel better and can do more.

Regards,
Flori

[Lani]

breast cancer years before it becomes clinically detectible:

Tumor Glycome Laboratories of the NIH Alliance of Glycobiologists for Detection of Cancer and Cancer Risk

The National Cancer Institute is funding an initiative to discover, develop, and clinically validate cancer biomarkers based on complex carbohydrate structures attached to proteins and lipids. Seven Tumor Glycome Laboratories are searching for glycan-based biomarkers for breast, ovarian, lung, prostate, and pancreatic cancers and melanoma.
Numerous studies comparing normal and tumor cells have shown that changes in glycan structures on the cell correlate with cancer development. Compared to molecular proteins, molecular glycans are extremely abundant and recent advances in technology have now allowed the effective systematic study of these structures.
NCI's Tumor Glycome Laboratories are the principle component of the new trans-NIH Alliance of Glycobiologists for Detection of Cancer and cancer Risk. The other members of the Alliance are the Consortium for Functional the diagnosis of breast cancer years prior to diagnosis, or so she hopes

The NIH seems to feel her research is especially promising and her personal commitment, energy and the attitude I gleened from my conversations with her made her stand out in the way that a dog who wouldn't give up a slipper over its dead body ie, I doubt she will give up any promising research direction nor fail to pursue all others within her capability

Glycomics supported by the National Institute of General Medical Sciences and the Glycomics and Glycotechnology Resource Centers supported by the National Center for Research Resources.
The seven Tumor Glycome Laboratories are:
PROJECT TITLE
PRINCIPAL INVESTIGATOR
INSTITUTION OBJECTIVES OF PROJECT
(CANCER TYPE UNDER STUDY)
Discovery and clinical validation of cancer biomarkers using printed glycan array
Margaret Huflejt, Ph.D.
Cellexicon, Inc. Determine the diagnostic or prognostic anti-glycan auto-antibody signatures in patients and for breast cancer, determine how many years prior to diagnosis that progression to cancer can be predicted.

[Becky]

I would send mine out too. Since I am ER+ but PR-, it would be a different kind of Her2+ tumor that is not as common. I'm in and in to help if need be.

[Lolly]

I would be willing to donate samples of my original tumor, ER/PR-, HER2+++. I haven't yet requested them from the facility storing them, but as soon as the holidays are over will start that process.
As far as actual leg work, I'm not physically able to offer any at this time, but if my new regimen is effective that may change.
Anyway, count me in for the tumor registry. I know UW/Seattle took many blood samples in the course of my participation in the vaccine trial, but I believe they can't share those.
But, as someone else pointed out, one of the samples they needed was drawn at my onc's office during the course of a regular blood draw, after UW had sent the "kit" to ship it back.

Count me in.

<3 Lolly

[DEBBIE S]

Lani and others ....

I do not post a lot on the site .. but I try to read as often as I can since
I do this all from my employer's PC .... I would be willing to particpate in the study and send samples ... I have kept as many copies of reports that I can.. I am so thankful for Lani and the others who keep us so informed and truly dedicate much, much, time and energy to the site..
I will keep checking for updated info regarding this ... and again a big
thank you to all of you who invest so much time on this site...

God Bless,

Debbie

[Sheila]

I too am interested in getting my tumor and helping if needed. I would think this project would get major support here!

[hutchibk]

I have to check to see where they are stored (will do that tomorrow - my doc should know), but I have 2 tumors to donate... which might be interesting in it's own right, since my original tumor was
HER2+/ER+, and my first recurrence was HER2+/ER-.

I'm in.

[Christine MH-UK]

Despite neoadjuvant FEC my tumor was still over an inch when it was removed, but moth-eaten, so there should be plenty to share. The only complication is that four years post-diagnosis my onc signed me off (new hospital policy), so I will have to deal with such matters through the surgical team. Still, I am willing to see if I can get a bit of my sample/ blood work sent off for this project. I have had too many friends not make it and also have no idea why I have survived NED for so long.

[Julie2]

I can definitley share my medical records and blood sample but my tumor sample is very little as I had complete response with my neoadjuvant chemo.

Julie

[Barbara2]

I will share all that is necessary, too. I'm wondering what my onc would say...Once when I asked him about testing my tumor for Ki-67 he talked me out of it siting that I have had a couple of tests done on the tumor, and we don't want to use up too much of it, in case further testing has to be done at a later time.

I had a large tumor...4.5cm which is almost 2 inches, so it seems I should have plenty to spare. Only a small piece is needed, so I am not concerned.

[Cathya]

Lani;

I am not sure how to go about this but am totally prepared to offer whatever you need (tumor and/or pathology report .....I am ER+/PR+, Her2+ borderline). I live in Canada (if that makes a difference in obtaining samples?) and know a couple of other Her2+ bc patients not on the site who I am sure would also agree to support this effort. Your efforts are certainly not unappreciated .... rest and let us know exactly what you need. Happy holidays.

Cathy

[AlaskaAngel]

Barbara and everyone,

The idea of donating seems pretty simple until some of these questions come up. I was considering participating in a clinical trial that required a piece of my tumor for analysis just prior to what I knew would be 5 years from my surgery for breast cancer. So while I was waiting for the Seattle site for the clinical trial to start accepting candidates, I had my tumor blocks sent to me, to be certain I at least had them for certain. As I think maybe StephN pointed out, there are the slides of the tumor that were originally made from part of the tumor and stained and used for the diagnosis, and then there are the tumor blocks. I was given the choice of taking either one, but not both. I had the blocks sent to me. The slides are still held at the Seattle path lab. In the particular institution where my slides are maintained, they are kept for 5 years where they can be rapidly accessed and then at 5 years they are transferred to storage that takes a little longer to access, and are kept there at least another 5 years and most are kept much longer.

Tumors vary. Some, for example, might be 2 cm across at widest point, but maybe some of that is just fingers here and there sticking out... so some parts might be better for analysis than other parts. For example, I had my original core biopsy here in Alaska and that is stored at the path dept here. When it was read by the pathologist, that pathologist came up with a preliminary estimate of the characteristics of the tumor, and that estimate was that it was only grade 2 based on the portion of the tumor that was the core sample removed from the entire tumor. Then when I had my surgery in Seattle to remove the tumor, more tissue was available and.... that portion was analyzed to be.... grade 3.

So, for some of us it isn't like any part of the original tissue block is as good as any other part when it comes to being used for scientific purposes, including any future use I might have for some of it if I want to use it for analysis to use with some future targeted drug. Some parts of mine are more "valuable" to me than other parts.

So when I was considering participating in the clinical trial, I asked how much was going to be required for the trial. I was told that mere microns are sufficient. (They did tell me that no one EVER asks these questions. That doesn't stop me, or even slow me down.) I don't know about YOU, but if I have just one tumor to hang onto and it can mean the difference between being able to use a better treatment at some point or not due to lack of adequate or accurate representative piece of it, I'm going to be... downright PICKY about it. I could not get a definite answer as to how much the path lab was going to take for the trial, or even whether what they would take would leave any truly representative portion for me to use for future testing if I needed it. My guess is that when the path lab is asked to create the sample for the trial, they aim at taking the most representative part of the tumor for the portion they remove. I may even need more than one sample eventually for targeted treatment, who knows?

Some people's tumors are very small. Or even if the tumor is large, maybe most of it is fingers or even thready or scattered bits of tumor cells. So this can be a very important thing to define before simply contributing to a registry.

If anyone knows any different, I hope they will correct me. I am all for establishing a registry and donating but I do want to be sure we each have what we need for our own testing and that we each know what we are doing when donating any.

AlaskaAngel

[Lani]

in fact most researchers prefer either a core or an already "sliced" slide

Both require tiny bits of tissue--but if you are someone who had DCIS with microinvasion or a 2mm tumor, it might not seem so insubstantial

I got my first reply from the three emails I sent:

It was nice meeting you again in San Antonio. When you have a more detailed proposal please forward it to me. I did discuss the general idea with the head of our bioinformatics and she will be glad to further discuss the proposition, once we have more details. Of course we need to make sure that if and when material will be collected, it will be via appropriate means, i.e., transferring it from one institute directly to the other, to allow high fidelity of the material.

I am waiting for a reply from the gentleman from Washington University who supplies tissues to researchers,

Not a good season to get prompt replies, but...I am thrilled that there are now 29 replies on this thread and it is only 4 days old.

[mimiflower07]

i am very excited to hear that this may be possible just wondering if being Canadian will come with different rules and protocols? I will begin to look into it from this end after holidays.
just recieved via mail a request for tissue for research being conducted here in Can but will hold off till i know more from this site.think it make more sense to have her2 tissues all together for mass research.
suzanne

[Lani]

is already involved in a service (?don't whether whether for profit or not-for-profit) which helps researchers find tissue specimens to work on

Seeing how Washington University took their right to hold onto the prostate cancer samples donated to Dr. Catalona's research when he decided to move to Northwester (not sure of the chicken vs egg of this) all the way to the Supreme Court, I am somewhat in doubt as to whether this would be an institution in the running at all. Unsure of his motivations, but here is his answer:

Good afternoon,
Sorry it took so long to get back to you. Of course, everyone wants
everything before the holiday.


As far as a Her2+ registry...
Most investigators want to compare the results on Her2+ and Her2-
When using the same biomarker, reagent, protein, etc.

When investigators request our tissue microarrays we give them the ER,
PR, and Her2 status on each case. When investigators request full
tissue sections, we cut another section for them to run the Her2 test
(if they desire this result).

So at this point, I would suggest donating the tissue to a resource so
they can use it. Of course, keep a block for yourself (well for your
doctors).

Creating a tissue resource requires a lot of time, money, government
approvals, IRB approvals, training, etc. Most resources take years
before they are actually up and running and can help investigators.

Hope this helps.

[Lani]

is already involved in a service (?don't whether whether for profit or not-for-profit) which helps researchers find tissue specimens to work on. I thought perhaps he could pass on some words of wisdom on what it takes to set up a registry or donate samples to an established institution to be utilized in their own or others research.

Seeing how Washington University took their right to hold onto the prostate cancer samples donated to Dr. Catalona's research when he decided to move to Northwester (not sure of the chicken vs egg of this) all the way to the Supreme Court, I am somewhat in doubt as to whether this would be an institution in the running at all. Unsure of his motivations, but here is his answer:

Good afternoon,
Sorry it took so long to get back to you. Of course, everyone wants
everything before the holiday.


As far as a Her2+ registry...
Most investigators want to compare the results on Her2+ and Her2-
When using the same biomarker, reagent, protein, etc.

When investigators request our tissue microarrays we give them the ER,
PR, and Her2 status on each case. When investigators request full
tissue sections, we cut another section for them to run the Her2 test
(if they desire this result).

So at this point, I would suggest donating the tissue to a resource so
they can use it. Of course, keep a block for yourself (well for your
doctors).

Creating a tissue resource requires a lot of time, money, government
approvals, IRB approvals, training, etc. Most resources take years
before they are actually up and running and can help investigators.

Hope this helps.

[Lani]

I have learned that even those who leave art collections to museums cannot be assure that they will keep the collection together and that they will not just sell the objects to another museum.

We live in a complicated world...

[Bev]

Yes it is complicated. I'm fine with paying costs if they're in 3 figure mode. I'm not very useful but can email or do pm's to members. BB

[lilyecuadorian]

I WILL SEND MINE TOO ..NO DOUBT ABOUT IT

[Barbara2]

Alaska Angel, my tumor was very similar to what you described. It had a core of about 2.6cm, but fingers that stretched out to 4.5 cm.

The report from the needle biopsy said the tumor was a grade 2; after the sugery, the report listed the tumor as a grade 3.

You brought up some interesting points. It's good to question things. I have also been told by my onc that "no one has ever asked that question before." It seems most people accept whatever they are told and don't think about the "why's" or "what if's." They simply accept whatever they are told.

I'm so glad we have people on this site that ask tough questions and are forever looking for answers to this cancer puzzle. More "heads" are always better than one when looking for answers.

[Mgarr]

Willing to send mine or anything I can do. Let me know.

Mary

ps thanks for all the time & energy you all put in

[Lani]

of Dr. Margaret Huflejt, I found a video of her talk at an AACR conference regarding TACAs

http://www.aacr.org/home/scientists/meetings--workshops/view-webcasts-from-aacr-conferences.aspx#

I think you get a sense of her abundant energy and passion for her research.
_Warning--lots of long words, but illustrations

[Lolly]

"...Of course we need to make sure that if and when material will be collected, it will be via appropriate means, i.e., transferring it from one institute directly to the other, to allow high fidelity of the material..."

Lani, should I wait to ask for my slides to be sent from the hospital where I had my initial surgery performed? I checked last year and they told me their policy was to store for 10-15 years and I can check again to make sure this policy is still being followed. Seems like it might be the "safer" bet at this point until we know more about the criteria for transport.

<3 Lolly

[Lani]

I read the request here for someone going to SABCS to see what we could do to speed up research on her2+ breast cancer by donating tumor specimens and the access to medical records information.

I had NO IDEA, not being in the field, of what is entailed if a formal registry is started, or what legal issues are involved (see my post on Supreme court case of whether the university or the researcher or the patients owned their prostate cancer specimens!).

This does not appear to be a mom-and-pop operation but rather on an industrial-scale, which both disspoints me and concerns me.

All here I am sure had and have the best of intentions.

So why do things seem so complicated?

I approached those who seemed to be passionate about the her2 research they were doing, hoping they would know what to do.

I am a fish out of water here.

We may just not have found the right people here. There is more research to do, asking those who have done/are doing something similar, to learn from their experience. Smoozing with the right sorts (Joe has some very constructive, informed suggestions having encountered many of the movers and shakers in the breast cancer advocacy world)

This skills for going forward are not necessarily mine (mining a multitude of published articles for information useful to a few, filtering out the promising ones, asking pertinent, if not insightful, questions).

After the holidays, I hope several here will pick up the gauntlet and run.

They will not be alone, as I am not backing out.

Wishing you all happy holidays and all the best in 2008!

The bottom line: the specimens aren't going anywhere yet, but I recommend those interested locate their specimens, find out what the institution plans to do with them (ie, toss at 5,10, yrs etc) and either get involved in the project or wait until someone who is suggests what best be
done.

[AlaskaAngel]

Hi again from Alaska,

We all want to do something to help move things along faster. I'd like to see whatever we do with our samples make the most difference possible. That might take a little more time for checking out possibilities, but it also allows the opportunity for consideration of the broadest range of suggestions.

Here at HER2support we have international participation online, a HER2 think tank that has no borders. How do you feel about that? Is that an important part of this project? Are you interested in trying to encourage the participation by HER2s around the world? Or should the focus realistically be more limited? Should it be based with a couple of chosen institutions or researchers or specific research proposals, or countries?

In creating a registry, it might be worthwhile to build in the possibility for expansion of wider data collection from the beginning so that it isn't more difficult to decide to do that somewhere down the road.

That would include having to consider any challenges involved with differing legal requirements in different locations. If there were no precedent, it could be more difficult. But there IS at least one. Somehow, someone with vision was able to find a way to collect tumor samples and blood samples and patient histories on a worldwide basis as prerequisite information for the TEACH trial. What would need to happen to be able to create a registry similar to that?

AlaskaAngel

[Donna]

whenever and however this gets put together, let me know, I would be glad to participate.

Thanks so much!

Donna