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?