HER2 Support Group Forums - View Single Post - patient centered her2+ breast cancer research--PLEASE VOLUNTEER to donate your tumor

Lani · 12-18-2007, 03:55 AM

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.

12-18-2007, 03:55 AM	#14
Lani Senior Member Join Date: Mar 2006 Posts: 4,778	Alaska Angel 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.