rolepaul I know this is not for the here and now

[Lani]

but if it herceptin/pertuzumab etc keep lm mets under control but do not eliminate them (I fervently hope that is not the case) the future may be prevention and/or treatment utilizing a virus:


Neuro Oncol. 2014 Sep 14. pii: nou231. [Epub ahead of print]
Viral infection of implanted meningeal tumors induces antitumor memory T-cells to travel to the brain and eliminate established tumors.
Gao Y, Whitaker-Dowling P, Barmada MA, Basse PH, Bergman I.
Author information

Abstract
BACKGROUND:
Leptomeningeal metastases occur in 2%-5% of patients with breast cancer and have an exceptionally poor prognosis. The blood-brain and blood-meningeal barriers severely inhibit successful chemotherapy. We have developed a straightforward method to induce antitumor memory T-cells using a Her2/neu targeted vesicular stomatitis virus. We sought to determine whether viral infection of meningeal tumor could attract antitumor memory T-cells to eradicate the tumors.
METHODS:
Meningeal implants in mice were studied using treatment trials and analyses of immune cells in the tumors.
RESULTS:
This paper demonstrates that there is a blood-meningeal barrier to bringing therapeutic memory T-cells to meningeal tumors. The barrier can be overcome by viral infection of the tumor. Viral infection of the meningeal tumors followed by memory T-cell transfer resulted in 89% cure of meningeal tumor in 2 different mouse strains. Viral infection produced increased infiltration and proliferation of transferred memory T-cells in the meningeal tumors. Following viral infection, the leukocyte infiltration in meninges and tumor shifted from predominantly macrophages to predominantly T-cells. Finally, this paper shows that successful viral therapy of peritoneal tumors generates memory CD8 T-cells that prevent establishment of tumor in the meninges of these same animals.
CONCLUSIONS:
These results support the hypothesis that a virally based immunization strategy can be used to both prevent and treat meningeal metastases. The meningeal barriers to cancer therapy may be much more permeable to treatment based on cells than treatment based on drugs or molecules.
© The Author(s) 2014. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
KEYWORDS:
VSV; blood-meningeal barrier; memory T-cells; meningeal tumor; viral therapy

PMID: 25223975 [

[Rolepaul]

We shall see what happens. Right now, they think the brain spots are radiation still killing HER+ cells. I think it is the pertuzumab working. Still no proof it is recurrence. Working on the subcarinal lymph node met right now. Trying to get Herceptin and Perjeta systemically but drawing negative responses on that. Maybe the work that came out this week will help. Nina is doing great and traveling with me to Spokane after spending 17 days with her parents while her step father is working in Italy.
I want to go with a vaccine, but I have not had good luck getting Nina stable enough to be accepted into a program.

[Rolepaul]

Hold on to your hat. Nina's subcarinal lymph node was at 1.8 by 1.4 cm on August 1 and it is now back to normal. The brain lesion that was a possible source of concern is now about 25% of its previous level. We had Nina get three doses of TDM-1 in a systemic treatment as well as the IT Topotecan and Herceptin. It is clear that this has essentially put Nina into full remission. This is providing information to other patients, doctors, and the drug industry. Genentech is getting all her treatment monitored intensely. The big issue is the darn cost. I pay for massage, treatment co-pays, and travel to Houston at over $20K per year. It is really painful. All this Pink stuff is really making me angry as I am not seeing any help from airlines, rental car companies, nor hotels. Nobody helps with the co-pays, the difference between the $2500 in FSA and $4500 the max out of pockets is crushing me. I think this is a disgrace to Breast Cancer patients.

[suzan w]

Rolepaul...I am with you about all the "Pink" ...We basically went from being very well prepared financially for our future...to living paycheck to paycheck...after the huge outflow of $$$ for co-pays and "experimental" treatments not covered by insurance...and tests deemed "not medically necessary"...including the BRCA testing we paid for...which, by the way, showed BRCA 2+. The frustration when we hear..."at least you have insurance..."
PS. Great news about Nina!!

[sarah]

So happy to hear Nina is doing well, may that continue.
Have you contacted Komen? They should help. I don't think many of us understand what it is they exactly do. I visited them and went to a conference when I lived in LA many years ago and I still haven't a clue about them but we know their name.
Maybe call the president of the airline and get his secretary, they have a lot of influence on their bosses and explain to her (or him) your situation. Maybe you'll get a sympathetic ear and then some help. If you offer to go standby and pay a low or free fare, why wouldn't they help? They could just award you a huge amount of miles to cover some flights. surely by now you must have some free mileage trips - I certainly hope so.
Lani, the virus idea sounds good. I'm reading" the immortal life of Henrietta Lacks" about the woman whose cancer cells are immortal and have been used to find polio vaccine and hundreds of drugs. fascinating story.
Health and happiness and damn it, it's time for a cure!
sarah

[evlin75]

Rolepaul,
How often and at what mg is Nina now getting the treatments to the ommaya? My daughter Susan is getting just the Herceptin 80 mg per ommaya every week, without any other medication added. She is thinking of getting it now every two weeks. She fell and fractured her hip and is still recovering but the cancer seems stable. right now. She has lost a lot of weight.
She travels quite a few miles for her treatments.

[phil]

i was at farber mbc forum last week and they mentioned that t dm-1 is showing some effectiveness against brain mets . they are surprised as it is a large molecule drug - not sure how it passes bbb.

[Adriana Mangus]

Agree with you, Paul. I used to love October because of the beautiful moons, no more. It's all about the stupid pink color, give me a break.

I feel your pain, so much money the companies make during the Breast cancer awareness month, but it does not help those in need, people like you and the ones without medical health insurance. Shame on them!!

Take care, please give my best to Nina.