Suspicion of many scattered brain mets
 

Hi there,

Had a CT scan of the brain. They now sugegst a follow up MRI as the CT scan was "suggestive of many, small scattered brain mets". Trying to get the MRI scheduled ASAP to get clarity, but has anyone been in this situation? If so, assuming it is in fact mets, what treatment(s) did you get? How long ago? Any way to get around WBR?

It's galling that the rest of the body is still stable, apparently. Oh well, BBB, I guess, is doing it's job...

Needless to say, very, very scared right now.I have a daugther that will turn 7 next week. I so wanted to see her turn 10...

Thanks!

Re: Suspicion of many scattered brain mets
 

I don't have any experience with this but I wanted to extend my sincere concern to you. I'm sorry you are going through this. waiting for confirmation is excruciating. I pray your wait is short and results are not serious.

Re: Suspicion of many scattered brain mets
 

I'm so sorry you're having to deal with this. I don't have any experience with this either so can't offer any advice, just my prayers for a good outcome.

Re: Suspicion of many scattered brain mets
 

I don't have any experience with mets. However, I do know that there are many women on this site that do. One member (StephN) had brain mets 10 years ago and is still doing well. Additionally, my understanding is that there is a lot of research and trials underway currently for treating brain mets.

The waiting and not knowing is brutal. I feel for you. I pray that you get the results soon and that the results bring you back to stable asap.

Take care,
Brenda

Re: Suspicion of many scattered brain mets
 

The research they are using is several years out of date. They are going to offer you WBR because its the best they can offer to you right now. It might work, it might not. They can do things like give you alzheimers drugs and try to spare the hippocampus -- you will still likely experience a cognitive deficit.

I don't know where you live but right now new "Right to Try" laws are being passed across the country and they allow patients like you to try to do something different. Take a look and see if your state shows up, if not it is still probably leveragerable in your favor.

A little bird told me that Genentech knows that IT Herceptin can go after deep brain mets in a way that existing therapies for brain mets do not. They aren't reporting on this as they don't want to get in trouble with the FDA. IT Herceptin is a reach for you without leptomeningeal disease but it might save your life.

Re: Suspicion of many scattered brain mets
 

I sound jaded, that is because I am. ;)

I have been offered WBR several times now. First after they resectioned my cerebellar tumor in the summer. I declined and received LINAC SRS to the tumor bed instead.

Then last week, the proscribed plan included WBR. I declined to the RO -- who admits she doesn't know what targeted therapies can do at all. I was even lambasted by the MO (hello? not your practice area or discipline) for declining WBR.

I still have WBR in my back pocket if I want to do it, if treatment doesn't work. It isn't off the table. But consider this:

They offer WBR because it it standard of care
They offer WBR because "sometimes" it works
They offer WBR because they believe we are going to die soon anyway so it is a reasonable palliative measure in that situation.

It might buy weeks, months or if you win the jackpot -- even years. If you live long enough then the side effects will become evident, the toxicities to the brain of irradiating it are permanent and you cannot undo them.

Compare that instead to IT Herceptin, especially where there is a known PCR elsewhere in the body:

It is known to be safe
It is reversible -- you can undo it if you really want to and without harm to your body
It is well-tolerated
(and evidently it treats deep brain mets too)

The problem is that there aren't studies supporting this yet and they aren't even studying it either. They don't know how long to do treatment for, with what agents, and they don't know when to stop or how. From what I have been reading women are living 4+ more years -- even when given poorer dosing regimes than RuPaul has described. Compare that to the 3-6 months given for LM patients, or at best guess high GPA (graded prognostic assessment) of a 50% chance of living longer than 2 years and they can bite me.

Fight this girl.

Re: Suspicion of many scattered brain mets
 

Fight with everything you have. Be a squeaky wheel. Stay strong and try to remain positive. Everyone on this site is praying for you!

Re: Suspicion of many scattered brain mets
 

Unfortunately no good news here. Brain mets confirmed. Two 5 mm ones in the cerebellum (still horseback riding, though, which I find kind of amazing), and apparently a scattering of "points that light up" "everywhere". Meeting with onc on Wednesday. From my perspective first choice is IT Herceptin - wondering whetehr that is sometimes combined with stereotactic radiosurgery (on the two bigger ones?).

Second choice T-DM1 + Perjeta. Or possibly try and get into the trial (or compassionate access?) for ONT-380.

CANCER SUCKS.

I need another 10 years with my daughter. I cannot go yet.

Re: Suspicion of many scattered brain mets
 

We are going to try to heal you and me both. Your girl needs you, your family needs you.

Don't give up yet. Are you willing to switch your diet drastically? I just did it and I think it makes a huge difference. HER2+ BC likes the CNS because it is protected there and it loves the glucose. You can switch what you eat to have your body change its energy source and burn ketones instead and it will f@#K with the cancer.

Have you requested IT Herceptin yet? Where do you live?

((big hugs)) coming your way

Re: Suspicion of many scattered brain mets
 

Hi Agness,

thank you. I live in Canada (GTA). A little bird told me that apparently 2 other women managed to get IT Herceptin in Toronto. That is what I will request from my onc on Wednesday, and I will not take no for an answer.

I have cut back on sugar (drastically reduced processed sugar, if any then fruit or honey). I can't manage to cut out all sugars and carbs - I would starve, I think. I don't mind the sugar too much, even though I occasionally ahve a pice of dark chocolate. But I love milk in my coffee and milk products. And while I will try for whole grain (pretty much anything: bread, noodles, rice, etc.) I can't always do that eating out. How do you manage that, and still live a halfway "normal" (ha! what the heck is normal now???) life?

Re: Suspicion of many scattered brain mets
 

Please look at the Ketogenic diet. If you can read the book - Cancer as a Metabolic disease. I have have focused radiation on three instances (separate) of brain mets. The largest being 1cm. First in 2011, then 2013, and the most recent two in 2015. The latest is a mere 1mm. I was able to experiment a bit a long the way and I did see slight shrinkage of a brain met on the Ketogenic diet. Also look at using Frankinsense oil internally (1 drop on your tongue, pushed up to the top of your palate every 2 hours) must be pure enough for internal use. Hang in there, don't freak out, you can do this and you will celebrate your daughters 10th and many more. No carbs and no sugar. Another really good book, published this year - How not to die.
Please keep us updated.

Re: Suspicion of many scattered brain mets
 

The Ketogenic diet is an excellent idea. Im reading that book now "Cancer as a Metabolic Disease. Im not page 300 of about 425 pages. Cancer cells have problems in their mitchondria and cant oxidise glucose so they ferment it. They also ferment glutamine. They are unable to ferment ketones and this diet could be used to treat cancer. You must have a scientific background Waterdreamer. If it were not for all the chemistry I took in pharmacy school there is no way I could follow the book. Its not easy reading

Paul

Re: Suspicion of many scattered brain mets
 

I did the Keto Diet when I was on Herceptin. I did it for year and I was monitored by a dietician. It is a tricky diet to be on, not going to lie. You need to consume foods that are high in fat, not sugar, no carbs. But most importantly, you have to monitor your ketone levels every day. It's a science. It's tricky but doable if you are determined. I would highly advise you to become familiar with the Keto Calculator and maybe find a dietician that can help you navigate the diet. But it has amazing results.