Please help

[KG1993]

Just got home from hospital. Mom who was dx aug 2011 with bone mets and small lesion on liver now has a 3 cm lesion in frontal lobe and possibly 3 small mets in cerebellum (back of brain).

Do not know treatment plan yet.
Advice?

please help.
Kim G

['lizbeth]

Here are some clinical trials for brain mets:

http://clinicaltrials.gov/ct2/result...&Search=Search

[karen z]

I am not experienced in this area but there are a lot of folks who can provide advice and will.

[sarah]

Hello,
Sorry to hear about this. Has anyone mentioned cyber knife? It may depend where it is, not sure. Some people on the site have done that successfully. Different parts of the brain effect different functions such as balance, etc.
Take care,
hugs
sarah

[NEDenise]

Kim,
Sorry to hear about your Mom's latest issues. Does she live near any of the "major" cancer centers?

I recently had my brain mets Gammaknifed. It was quick, relatively painless, and so far it seems to have worked. But, like your mom, my mets were deep inside my brain, so I definitely wanted a surgeon, at a major facility, who had done thousands of these procedures before me.

Sadly, we have recently lost one of our "go to" brain met experts...but there are a comforting number of us still around! I hope some of them chime in here too.

Take a deep breath, Kim. Try to relax a little. And please, keep us posted.
Denise

[Pray]

Kim, I wish I could offer advice. Please know that you are in my prayers. Gods blessings to you and your family

[Lani]

Where do you live?

There are nonsystemic alternatives for both the brain mets and the liver mets

There are cyberknife and gamma knife as well as whole brain radiation. The first two avoid a lot of unintended effects on the brain and many here have been successfully treated that way. Larger brain mets may need to be treated more than one time as I understand it

There are many ways to treat the liver met, but the brain must come first as swelling inside the skull can be a medical emergency.

There is a website called brainmets.org which might be helpful

I have no personal experience here, so wait for others to chime in

I have posted on the difference between cyber and gammaknife and asked others to post exactly what happened when they went in for treatment so others could benefiteg gamma knife requires a placement ring which just bareless screws into the skull whereas cyberknife does not. I got several people to describe just how this worked/felt.

If you go to the search function in the magenta bar above and type in Lani cyberknife or Lani brain mets I have posted on boswellia, tykerb and other substances that cross the blood-brain barrier.

Please also look at my posts on radioactive iodine treatment of brain mets and today's post that there is a trial of radioactive iodine for those who don't just have brain mets. As it is Stage I, it is not for her now. As I understand it he needs to have a treatment confirmed to work to get any swelling down quickly such as cyberknife/gammaknife/or whole brain radiation.

I have posted articles showing that it is important to remain on herceptin even after brain metastases just adding other drugs that do cross the blood-brain barrier as those who remained on herceptin even after the brain mets did MUCH better.Again. use the search function for herceptin brain metastasis or herceptin after brain metastasis.

I try to keep posting on this site an arsenal of information for those facing
new problems. They are from the scientific literature but usually I try to translate them to make them more understandable and the input from those who have actually gone through the treatments you will find on this site is invaluable.

Best of luck!

[karen z]

Lani,
Thanks for all of this info.
KZ

[mamacze]

Hi Angel,
Such a tsunami rushing through your home right now. I love that you are able to take a deep breath and seek out information before meeting with the oncologist. Lani offers a mountain of information; so tuck in and read it; knowledge is power. Also, see my post on genetic tumor profiling - the results of my genetic profile was immensely helpful and this may be helpful to your mom as well. How fortunate your mom is to have you at a time when her head is no doubt in a whirl. God speed to you both and please stay with us and keep us posted.
Love Kim (from CT)

[KG1993]

After the MRI was finished we found out that mom had multiple brain mets so she started the whole brain therapy treatment she is currently on day three hoping for the best thanks for all the help. Kim

[Paty]

Kim, cannot provide any info, but just wanted to let you know that I am thinking of you and that I will keep you both in my prayers.

[jml]

Kim~
So sorry you guys are dealing with this. I hope my experiences can be helpful to you, at least give you some information about options.
I've had brain mets 2x & recurrent liver lesions treated with a variety of modalities & therapies over the years.

First the brain mets:
In June 2010 we found a single 4mm lesion in the frontal L lobe of my brain.
It was successfully treated with Novalis - a single zap, effective & well tolerated, but kind of uncomfortable post op healing from the head frame screwed into your skull at 4 points to stablize the head placement during the treatment.
That area has remained NED ever since.

Then in January 2012, we discovered 8 lesions in my brain. The largest were in the R frontal lobe and the other in my brain stem.
I was asymptomatic at the time, but they immediately put me on a high dose of decadron (steroid) to combat any swelling, from the disease and the treatment.
I had 15 days of WBR, lost my hair globally after about 5 days.
Good news is that my brain has remained NED ever since the first 1-month post WBR brain MRI.
The decadron is a very strong drug with all kinds of weird side effects, and it took about a month to gradually ween off of it. And in the interest of full disclosure, I feel like I have some residual memory deficits as a result of the WBR and my ears are always a little congested, but Brain is NED and that's what's important.

As for my liver, I've had mets there since my primary dx in 2002.
So, for the majority of the past 10 years I have been wrestling with mets that respond to systemic treatment, but then recurred. In Jan 2005, I had RFA, but that procedure was not completely successful, leaving some viable disease, which then fully recurred & led to a liver resection of the R lobe in Dec 2005. I was NED in the remaining L lobe for ~3 years, but the disease eventually recurred.
Next was chemoembolization with Adriamycin - chemo delivered directly into the liver via the femoral vein in June 2010. Thus far my liver has remained NED.
But keep in mind I've also remained on systemic treatment ever since.
Right now I'm pleased to say through a combination of modalities and systemic treatment I have been NED in brain & body since June 2012. This is the first time I have been NED since 2005.
Keeping fingers crossed that NED will stay with me for a long long long possibly forever time, but just so happy with the resilience of my body to tolerate & still respond to so much treatment over 10 years.
It's not an easy road, but please always remember NED can still be possible.

I hope something I've shared with you is helpful.
Know that you are in my and all of our prayers, for you and your mom.
Stay strong, and when you can't, lean hard.

We are all here for you~

Keep the Faith!

Jessica

[KG1993]

I appreciate all of your Personal battles with Her 2 cancer my next question would be how long after you had the treatment did your doc issue another MRI to see if it helped? my mom's radiologist said that she would not have her do one there but it would be up to the oncologist.
Kim

[Rolepaul]

The better the resolution of MRI the better the analysis of the treatment. We used Intrathecal Herceptin for my wife, and Mario had Carol's doctors in Malta get treated with Lumbar Puncture Herceptin. In both cases, the doses were higher than was used in the past, but the result was no lesions seen in my wife Nina and Carol having signifcant lesion reduction. This was not the cyberknife or whole brain radiation short term treatments. The age of the person being treated, the health, and the ability to go to a large number of treatment sessions needs to be considered for the brain lesion path forward. I will let you know that we had MRI scans every 90 days until disease was found in the brain and spine. We have been monthly since then. The focused beam radiaiton and whole brain radiation both have some positive results. We chose not to do the WBR do to concern about short term memory loss and the resulting inability of Nina to return to nursing or massage therapy.

[marvass]

Hi Kim,
I think that you have to gammaknife the 3cm lesion, but if there are a lot of other small ones I would chose IT herceptin like my wife is doing if the herceptin worked on other parts of the body except here. If the herceptin did not work on other organs not in the nervous system then you have to consider other treatment that are going on. But take one step at a time, get rid of the 3cm immediately by local radiation before it does more damage. We are doing an MRI every 60 days.
Mario