Any survivors out there of nonsmall neuroendocrine ovarian cancer with mets to brain?

Patty Banzhof

First grandma had been diagnosed with ovarian cancer 2006, passed away from it 2010 (I think it spread to intestine, no where else). Then my mom got it, but a different cell type-nonsmall cell neuroendocrine ovarian cancer, Jan.2013, had hysterectomy, finished Etoposide and IP Cisplatin July 2013.  Everything "fine" for 2 checkups, then headaches for 2-3 days over New Year's weekend, then they went away.  Headaches came back Jan.11, 2014, this time with nausea, vomiting, head spinning, etc. and was found to have 5 tumors on the brain, from mets, as per MRI.  Now she is recovering at Genesis rehab in Elkton, MD, and Decadron has been a big help. They are weaning her off this and will off this around 2/25/14.  Finishing her final WBR 1/29/14.  Gamma or cyber knife was part of the plan a couple weeks from now, that is now not part of the plan.  She followsup with gyn/onc 2/10/14.  So what now?  Is this it?  Should we seriously start considering there are absolutely no other options?  She has plans and goals, wants to go back to her apartment, take care of her cat, go Aruba with my son and I, just go on and live LIFE.  Is this possible?  This is a very weird position for her and family to be in. 

Alexandra

Welcome to CSN Patty

Very sorry about your mom.

I don't have her type of cancer or mets to the brain. I can point you to a good review of brain mets caused by neuroendocrine tumors (NETs) which discusses appropriate treatment, prognosis, etc. Download pdf file http://www.enets.org/d.f.111.pdf. In patients with multiple brain metastases, external beam irradiation is the treatment and your mom is already being treated (WBR). It can be combined with surgery in individual cases, with the exception of poorly differentiated tumors. Here's where I would get second opinion from a reputable brain surgeon.

Steroids are the standard treatment for brain metastases to obviate the consequences of edema or as prophylactic therapy prior to whole-brain irradiation. Somatostatin analogs are recommended in patients with functioning tumors and occasionally in those with nonfunctioning tumors if they are SRS-positive. Interferon- is used in individual patients as an alternative to or in combination with somatostatin analogs.

I hope radiation helps your mom and she could come home and do all the things she likes to do.

With such strong family history of ovarian cancer, have you talked to a genetic counselor about BRCA testing for yourself?

Best wishes,

Alexandra

Patty Banzhof

Alexandra said:

Welcome to CSN Patty

Very sorry about your mom.

I don't have her type of cancer or mets to the brain. I can point you to a good review of brain mets caused by neuroendocrine tumors (NETs) which discusses appropriate treatment, prognosis, etc. Download pdf file http://www.enets.org/d.f.111.pdf. In patients with multiple brain metastases, external beam irradiation is the treatment and your mom is already being treated (WBR). It can be combined with surgery in individual cases, with the exception of poorly differentiated tumors. Here's where I would get second opinion from a reputable brain surgeon.

Steroids are the standard treatment for brain metastases to obviate the consequences of edema or as prophylactic therapy prior to whole-brain irradiation. Somatostatin analogs are recommended in patients with functioning tumors and occasionally in those with nonfunctioning tumors if they are SRS-positive. Interferon- is used in individual patients as an alternative to or in combination with somatostatin analogs.

I hope radiation helps your mom and she could come home and do all the things she likes to do.

With such strong family history of ovarian cancer, have you talked to a genetic counselor about BRCA testing for yourself?

Best wishes,

Alexandra

ovarian ca with mets to brain

Yes, I am in touch with a genetic counselor.  I have yet to meet with her a second time, this time to discuss "my options", according to the counsellor.  My mom has done the BRCA test, it was negative, so, the counselor said I do not have anything to worry about ( that if mom tested negative, that it is not in my DNA, I won't get the type ca mom has), and that I do no need the BRCA; however, I want the BRCA to be done on me anyway, because, I've put trust in doctors before, and, they wound up WRONG and the whole family suffers, because of their decision.  So, I need to make an appointment and get in there.  I also want to dind out what kind of cell my grandma had, because I think it's important going forward, but my sister was POA of her, and she seems to be holding that process up; she has yet to sign the release of records for the counselor to obtain this.  My mom is 15 days post-WBRT and this is the first day she sounds great on the phone, like her old self!  She is tapering off Decadron, and that stuff is making her swell up like a balloon!  But, she has been on Lasix since yesterday, so she thinks it's helping her swelling in her face go down, but her legs and feet are swollen so bad, makes it hard to walk, but hopefully the Lasix will help the legs too.  She followsup with Oncologist March 27th, gets her MRI and bloodwork a few days before, and by then see how the Radiation worked on the tumors (5) in her brain.  FYI- her chest, abd, pelvis CT was clear (2/11/14).  CA-125 WAS 31.  That was good.  That seems to ber her "normal" . Hooray!!  Mom was relieved and motivated!!!!   

Alexandra

Patty Banzhof said:

ovarian ca with mets to brain

Yes, I am in touch with a genetic counselor.  I have yet to meet with her a second time, this time to discuss "my options", according to the counsellor.  My mom has done the BRCA test, it was negative, so, the counselor said I do not have anything to worry about ( that if mom tested negative, that it is not in my DNA, I won't get the type ca mom has), and that I do no need the BRCA; however, I want the BRCA to be done on me anyway, because, I've put trust in doctors before, and, they wound up WRONG and the whole family suffers, because of their decision.  So, I need to make an appointment and get in there.  I also want to dind out what kind of cell my grandma had, because I think it's important going forward, but my sister was POA of her, and she seems to be holding that process up; she has yet to sign the release of records for the counselor to obtain this.  My mom is 15 days post-WBRT and this is the first day she sounds great on the phone, like her old self!  She is tapering off Decadron, and that stuff is making her swell up like a balloon!  But, she has been on Lasix since yesterday, so she thinks it's helping her swelling in her face go down, but her legs and feet are swollen so bad, makes it hard to walk, but hopefully the Lasix will help the legs too.  She followsup with Oncologist March 27th, gets her MRI and bloodwork a few days before, and by then see how the Radiation worked on the tumors (5) in her brain.  FYI- her chest, abd, pelvis CT was clear (2/11/14).  CA-125 WAS 31.  That was good.  That seems to ber her "normal" . Hooray!!  Mom was relieved and motivated!!!!   

Great news about your mom

Clear CT is great! I hope WBRT got rid of her brain tumors and Lasix helps with the edema soon. Keeping my fingers crossed.

Hugs,

Alexandra