ommaya reservior?

[mkrny]

Can anyone share personal experience with infusion of chemo to control BC mets to brain?

Background: Fighting it since 2001. Fairly strong her2 status. She has been on numerous cocktail and body scan look better each time. Unfortunately we haven't been getting MRI of head. Looks like that was a BIG MISTAKE!! My Maryann has just been diagnosed with a tumor a little under 3 cm in left parieto-occipital lobe plus minor (at this time) adjecent lepomeningeal and bilateral cerebellar mets.

We're in trying to converge on a preferred approach to treat and let the healing begin but down the road the ommaya reservior or similar may be recommended. Infusion would likely include methatrexate & ara-C.

[madubois63]

Dear Kenny and Maryann - Glad you posted. There are so many wonderful people here, and I am sure you will get some good advice. Just wanted to let you know I am here, and I am praying all the time for Maryann.

To everyone on the board, these are wonderful friends of mine and they need your help in making their decision on a treatment plan. Thanks so much...

[Unregistered]

Without knowing more specifics, I am wondering how many mets there are in total. If numerous, maybe starting with whole brain radiation with a trial drug might be a good way to go. They can clean up the larger tumors with a radiation surgery of some kind - whatever the best one they have available.

This is just another example of the ignorance of the med oncs in not being more proactive on checking our brains. It seems that the size of the largest is still within a treatable size without open surgery.

All the best wishes for a successful treatment.

StephN
(for some reason the site is not recognizing me right now ...)

[Sherryg683]

You and Maryann are in my prayers. I made sure my oncologist agrees that he will check my brain everytime he does a body scan, which will be at least every 4 months or so. He said that they are seeing more HER2+ women popping up with brain mets because the Herceptin doesn't protect the brain...sherryg683

[mkrny]

rsr13 appears to only be available at this time if you have not had or will not have surgery(resection or radio). So we have to scratch that off the list.

neurosurgeons want to cut out the main tumor and take sample of lepomeningeal on the way in. followup w/WBR then possibly ommaya reservior.

radio surgeons want WBR followed by the blast(depending on hospital the options my Maryann has are gammaknife, cyberknife or the Novalis Brainlab system).

Each makes a convincing argument to go their way. I'm inclined to start with the WBR and decide on the which surgery to do in 3 weeks but neurosurgeons aren't really into going in second.

Sign us - on the fence and in need of a sign,
m&k

[Christine]

RSR13, was suppose to be given at the time you are given WBR. Iam not sure when and how, but you can call ALLOS to find out more info. RSR13 HELPS TO BRING IN MORE O2 giving the Cancer a quicker death response.
Get your info from Allos on this drug. It was specically desined to enhance Brain radiation treatment.
I would like to know why??
Christine

[mkrny]

rsr13 is in stage III trial and I was told by coordinator of local trial that Allos is not allowing anyone who has had surgery or plans to have surgery in the trial.

WBR is part of our planned treatment but because we will also have surgery my Maryann is excluded.

I submitted a separate question for rsr13 that is short but contains trial contact link. I think I let this posting get off track. If I can't get this one back on track I will resubmit it.

Here my posting was seeking details and effectivity info on ommaya reservior. Can anyone share info to get this back on track?

[StephN]

Hi -
I am a little confused on the rsr13-surgery disqualification.

Do they mean OPEN surgery (crainiotomy) or radiation surgery or are not distinguishing??
I know that right now drugs are given that are to assist the WBR to work better, but may not be as effective as the drug in trial.

Seems like your wife should be able to get the Allos drug OFF trial by now if you can find a rad onc who will push hard for that. Have you contacted the company??

Wish I could answer your question about dosage, but do not know enough about the benefits of longer or shorter time frames.

I only know of one woman who used the Omaya device and I do not know what happened to her. Her tumor was lodged somewhere in the lining comprising the blood-brain barrier. Christine probably knows more about that.

[mkrny]

We got an education the other night during a 2hr conversation with Christine. She is a wonderful person. She couldn't share much on the ommaya reservior so she asked me to post to the forum in hopes that someone could share from experience.

I'll begin digging into this further and probing the onco's regarding this as I think it will be suggested as a future course of action.

p.s. Christine - We haven't stopped in to see your cousin yet but will tell her to call you when we do.
p.s.s. - I'll follow up on the rsr13 in that posting.
p.s.s.s. - sorry for attempting to enforce organization with separate postings but is the engineer in me.
Thanks
Ken

[Unregistered]

Yes, you cannot get eproxiril except in a trial. I was disqualified because i had emergency surgery on my brain. But i do use alot of oxygen before, during and after wbr. It may not help, but it can't hurt.