HER2 Support Group Forums - View Single Post - her2 resistance Lani's Post two cents worth

Lani · 04-05-2006, 01:42 AM

It's my birthday and I have houseguests, so I will try to answer all your questions an other day, but just to start...

I have heard of patients (some on this website) who had only her2 +DCIS with microinvasion who recurred as Stage IV. So there is no tumor so small it can be said with certainty that it needs no treatment.

What was your Ki67(sign of how quickly it is proliferating)? If it was low and your Grade was low (old fashioned microscopic appearance based way of telling how specialized vs. proliferative the cells were) those are both signs of a less aggressive tumor.

Targeted Molecular Diagnostics does tests (which Robin P says cost $190 a piece which may help)--also MD Anderson although it won't see patients for second opinions will do pathologic second opinions on your slides.

Dr Slamon said at San Antonio that he felt OncoDx was a waste of money--that it didn't tell you more than a well performed ER, PR, her2 by FISH and Ki67.

If you have the funds and your Ki 67 was high , you might consider the following tests from TMD (learned about them from RobinP):

PTEN--to see if herceptin was even likely to work in you (Rhonda H today listed a clinical trial out of MD Anderson giving combined therapy as a way to make Herceptin more likely to work in those with low PTEN.

pAKT--reportedly predicts whether tumor likely to be antihormonal resistant
(just one paper, not a "slam-dunk")

topo IIa--predicts whether anthracycline would even help (if negative any possible benefit of anthracycline(little or none) less than cardiac risk with herceptin (and probably without)

cox2--to see if something as simple as taking Aleve or Celebrex is likely to help

(other tests like EGFR, IGFR1 not necessary until lapatinib is approved--even if they are positive the drugs to inhibit them Tarceva, Iressa, lapatinib, etc are not approved for adjuvant use in breast cancer)

There are many other things you can do without a prescription from Vitamin D combined with Aleve, flaxseed oil/olive oil/walnuts (I am not the expert), tumeric. The preclinical evidence for these helping is for her2 breast cancer for the second, but not specifically for her2 breast cancer for the first and third.

From what I understand Dr Slamon was not seeing patients in 2005. I believe I read a post from someone who saw Dr. Slamon this year, so that may have changed. His secretary usually referred patients to his colleague Mark Pegram.

The good news--

your tumor was small so hopefully found early so hopefully less likely to have spread

your tumor was grade I so cells not "multiplying like crazy"

your tumor ER+ (you didn't say how much)--Dr. Pegram has published papers regarding the fact that her2+tumors have quantitatively less ER and PR even when their percentages are not that low. Targeted Molecular Diagnostics has a more quantitative way of measuring ER and PR but there is as yet no difference in the way you would be treated clinically based on it

ER+/PR+ tumors are GENERALLY less responsive to chemotherapy, but again the her2+hormonally+ tumors are a group that noone has described yet as an entity ie, they have grouped breast cancer into four types based on multigene arrays 1)triple negative 2)her2+ which are supposedly ER-
3)/4) two groups of ER+ tumors one of which has a better prognosis than the other, but both of which have a better prognosis than 1) and 2)

Most interviews I have read in the past four months state that herceptin is appropriate treatment for all invasive her2+ breast cancer, but if you listen to the audio recording of Dr. Slamon on Breast cancer update, he is not sure than the cardiac risk is worth it for those with a low grade, small tumor without lymphnode metastasis. I believe he is stating this based on the fact that Herceptin is always given with chemo in the adjuvant setting and all chemo (not just anthracyclines) can have some cardiotoxic effects.

He stated that there would have to be some comorbidity (eg 85 year old patient with preexisting heart failure etc) for him to ever consider giving Herceptin without chemo

The knowledge is evolving. There is so much that is not known.

You fail to list your lymph node status, but as you considered OncoDX I assume it was negative. That is also another GOOD SIGN to add to your others!

If you cannot be at peace with the answers you have received so far,perhaps you want to check how Er and PR positive you were on your pathology report, check your Ki67. You will have to decide if you want to spend $600-$800 to find out if herceptin would even be likely to work for you and if anthracyclines would be/would have been necessary or effective, and if something as simple as Aleve might be beneficial.

I will keep an eye out for opinions in the medical literature, conference summaries etc regarding T1aNOMO her2+ breast cancer The problem is that is almost always for ER- cases. One year ago, almost all the literature said only 10% of her2neu cases were ER+, now they say it is more like 45%!! As I said, knowledge is evolving.

Please do read my post regarding the oncologist with breast cancer. I bet she would be understanding of your concerns(not practical as she practices in California) Sometimes oncologists in private practice are less pressured to practice "evidence based medicine"ie, they won't do something unless there has been a clinical trial proving it , than those at academic institutions.

Just thoughts (more than I thought I would have time for!!!)

04-05-2006, 01:42 AM	#2
Lani Senior Member Join Date: Mar 2006 Posts: 4,783	Wow, that's a lot of questions! It's my birthday and I have houseguests, so I will try to answer all your questions an other day, but just to start... I have heard of patients (some on this website) who had only her2 +DCIS with microinvasion who recurred as Stage IV. So there is no tumor so small it can be said with certainty that it needs no treatment. What was your Ki67(sign of how quickly it is proliferating)? If it was low and your Grade was low (old fashioned microscopic appearance based way of telling how specialized vs. proliferative the cells were) those are both signs of a less aggressive tumor. Targeted Molecular Diagnostics does tests (which Robin P says cost $190 a piece which may help)--also MD Anderson although it won't see patients for second opinions will do pathologic second opinions on your slides. Dr Slamon said at San Antonio that he felt OncoDx was a waste of money--that it didn't tell you more than a well performed ER, PR, her2 by FISH and Ki67. If you have the funds and your Ki 67 was high , you might consider the following tests from TMD (learned about them from RobinP): PTEN--to see if herceptin was even likely to work in you (Rhonda H today listed a clinical trial out of MD Anderson giving combined therapy as a way to make Herceptin more likely to work in those with low PTEN. pAKT--reportedly predicts whether tumor likely to be antihormonal resistant (just one paper, not a "slam-dunk") topo IIa--predicts whether anthracycline would even help (if negative any possible benefit of anthracycline(little or none) less than cardiac risk with herceptin (and probably without) cox2--to see if something as simple as taking Aleve or Celebrex is likely to help (other tests like EGFR, IGFR1 not necessary until lapatinib is approved--even if they are positive the drugs to inhibit them Tarceva, Iressa, lapatinib, etc are not approved for adjuvant use in breast cancer) There are many other things you can do without a prescription from Vitamin D combined with Aleve, flaxseed oil/olive oil/walnuts (I am not the expert), tumeric. The preclinical evidence for these helping is for her2 breast cancer for the second, but not specifically for her2 breast cancer for the first and third. From what I understand Dr Slamon was not seeing patients in 2005. I believe I read a post from someone who saw Dr. Slamon this year, so that may have changed. His secretary usually referred patients to his colleague Mark Pegram. The good news-- your tumor was small so hopefully found early so hopefully less likely to have spread your tumor was grade I so cells not "multiplying like crazy" your tumor ER+ (you didn't say how much)--Dr. Pegram has published papers regarding the fact that her2+tumors have quantitatively less ER and PR even when their percentages are not that low. Targeted Molecular Diagnostics has a more quantitative way of measuring ER and PR but there is as yet no difference in the way you would be treated clinically based on it ER+/PR+ tumors are GENERALLY less responsive to chemotherapy, but again the her2+hormonally+ tumors are a group that noone has described yet as an entity ie, they have grouped breast cancer into four types based on multigene arrays 1)triple negative 2)her2+ which are supposedly ER- 3)/4) two groups of ER+ tumors one of which has a better prognosis than the other, but both of which have a better prognosis than 1) and 2) Most interviews I have read in the past four months state that herceptin is appropriate treatment for all invasive her2+ breast cancer, but if you listen to the audio recording of Dr. Slamon on Breast cancer update, he is not sure than the cardiac risk is worth it for those with a low grade, small tumor without lymphnode metastasis. I believe he is stating this based on the fact that Herceptin is always given with chemo in the adjuvant setting and all chemo (not just anthracyclines) can have some cardiotoxic effects. He stated that there would have to be some comorbidity (eg 85 year old patient with preexisting heart failure etc) for him to ever consider giving Herceptin without chemo The knowledge is evolving. There is so much that is not known. You fail to list your lymph node status, but as you considered OncoDX I assume it was negative. That is also another GOOD SIGN to add to your others! If you cannot be at peace with the answers you have received so far,perhaps you want to check how Er and PR positive you were on your pathology report, check your Ki67. You will have to decide if you want to spend $600-$800 to find out if herceptin would even be likely to work for you and if anthracyclines would be/would have been necessary or effective, and if something as simple as Aleve might be beneficial. I will keep an eye out for opinions in the medical literature, conference summaries etc regarding T1aNOMO her2+ breast cancer The problem is that is almost always for ER- cases. One year ago, almost all the literature said only 10% of her2neu cases were ER+, now they say it is more like 45%!! As I said, knowledge is evolving. Please do read my post regarding the oncologist with breast cancer. I bet she would be understanding of your concerns(not practical as she practices in California) Sometimes oncologists in private practice are less pressured to practice "evidence based medicine"ie, they won't do something unless there has been a clinical trial proving it , than those at academic institutions. Just thoughts (more than I thought I would have time for!!!)